Kierstead Family: April 2010

Events taking place between Jan. and March 2010

this entry written for journaling purposes, hence the reasoning for the lengthy post

* * *

In late November/December of 2009 I notice these weird spots on E's tummy. Noticing them only when I was putting lotion on her after bathes, I didn't think much of it. They were tiny brownish sometimes reddish dots that looked like little freckles/moles coming through her skin. I thought it was strange, they would fade and return in all random places from her chest to her tummy but thought nothing major of it. I figured I'd just ask her pediatrician about it at her next appointment - if I remembered.

* * *

January 22, 2010

I had Emma at the doctor for an ear ache. She was booby, had the fever, wouldn't sleep well, tugged at her ears - all clear signs of an ear infection. I'd done plenty of this with her big sister, I felt like a pro! (Sometimes Moms get that certain kind of confidence about them.) While he was listening to her heart, lungs, and tummy he began to ask me questions about her dots. I answered and then noticed he didn't even look in Emma's throat, it made me wonder why.

* * *

After giving Emma a prescription for her ear troubles he also gave me a paper to take to our hospital for a blood draw. He said her dots were called a Petechiae Rash and he wanted to check her blood counts, plasma, bone marrow, etc. I tried not to worry but I kept thinking of those two words he said, bone marrow. Usually the words "bone marrow" aren't brought up in happy, casual conversation. Yes, I was a little concerned.

* * *

I returned home, picked up Bubb's from school, and Daddy from work. We all headed over to the hospital for the draw. It was sad. The whole family went back to the room, that didn't last long. Marley was fine, watching... wondering. Though Emma was crying, they hadn't even begun. Just touching her made her cry. I believe this is a combo of her not feeling well and being extremely weary of strangers. Heck, not just strangers. People in general. Anyway, she was crying. Corbin covered his ears and walked out. Marley was intrigued. Colt decided the situation wasn't going to get any better so he took the two kids back out to the waiting room. And there I was holding my baby while they drew viles of blood from her tiny arm. One nurse holding her arm straight, one nurse taking blood, and one momma trying not to cry with her one baby.

* * *

Side note: the CNA drawing her blood also happened to be the same CNA with us the night Emma was born. She was also the same nurse to do the second blood draw a few weeks later. I love her!

* * *

The blood was drawn, the rash Googled, and we were scared. I love the Internet, don't get me wrong, but it can also give no comfort. Scary diseases (serious, life threatening diseases) were results of this rash. We were nervous, obviously spending lots of time praying. The doctor called back the following morning and said that the tests came back normal. Yea! What a relief!! I knew she was going to be ok, but I still had this nagging feeling that these dots (or rash, rather) was there for a reason. It hadn't even gone completely away, but why? Needless to say, I watched it for the next couple of weeks. I had questions but I knew they could wait. She had her 18 month appointment coming up, I could wait to ask the questions.

* * *

Feb. 2, 2010

She wasn't sick, what a relief! She wouldn't be happy because she was getting shots, but that's just how it goes sometimes. She still had her rash but this doctor (not her normal Pediatrician, but his partner who saw her the visit before) assured me that she was fine. She had the rash because she had been sick and coughing (though she hadn't been coughing) and it would go away in a couple of weeks. I took his word for it and kept watch for the next couple of weeks. But it didn't matter, it was only a matter of time before we were back at the doctors office.

* * *

Feb. 15, 2010

On Friday (the 13th) I noticed her rash had EXPLODED! It was the worst I had ever seen it. Not only was it badly noticeable it was moving up over her shoulders and up her little tiny neck, a few around to her back and down under the flaps of her diaper. By Sunday night she had a fever and I knew I had given her strep. It happened to be Presidents Day so there was no school. I begged my sister Tracy to go to the doctor with me, she kindly agreed. Emma's regular doctor, Dr. B., tested her for strep, though he wasn't sure if that's what it was. (Apparently most kids under 2 don't get strep, but my girls do!) He said if it wasn't strep he would have her tested for a UTI, that would be another likely cause of her high fevers. This would result in having to go to the hospital for a catheter. Which didn't matter because he was sending us back there for another blood test anyway. The same test but with a few extras. The strep test came back positive, no catheter needed... yet.

* * *

Tracy came with me for this blood test. It was a little easier to watch then the first. I knew what to expect and little E felt so crappy she did better this time around as well. The next morning we got the results and they came back normal. One of the levels were a little low but he said that was most likely because she was sick. He said to keep an eye on the rash and he'd follow up later. Done.

My horribly sick baby.

* * *

After a couple of days of her medicine she began throwing it up every time I gave it to her. And not just a "I'm gagging on this because it's gross, but I'll be ok" throw up. A literally "regurgitate every bit of it every time it touches my stomach" kind of throw up. It was horrible. I called her doctor and filled him in, he gave her a different medicine which totally worked. Except for a couple of days later she developed hives again. (Second medication that results in hives.) We took her off of the medicine all together, she had enough in her for a week and had no more symptoms we figure she's fine.

* * *

He asked about the rash. I could still see it through the hives. Not as bad as it was the week before but it was still there. Must be doing its "coming and going" thing. Dr. B. had talked with a colleague down at Primary Children's Hospital in the Oncology department who said that since the blood tests came back normal that the rash should go away if it was part of her being sick. If it didn't go away by the following week then to send us down there for some more tests. Apparently those doctors have better microscopes. This made Colt nervous. Being in his line of work he knows what Oncologist do. They deal with cancer in the blood. Again, we were back to being scared and praying for Emma and for comfort.

You can't really see the rash in this picture, but it's the only one I took. Just a bunch of little pin prick sized purple and red dots on her chest and tummy.

* * *

I had been praying so hard, that we would know if we needed to go to the other doctor. I wanted a clear sign. If she has something serious and we needed to get down to Salt Lake, make her rash BAD, really obvious. If it is nothing to worry about make that obvious, too. After a few days the hives were gone and they took most of her rash with them. I was comforted and felt the answers to our prayers had been answered.

* * *

March 8, 2010

We're back at the doctors again. Good grief, really?!?! Emma had a high fever again, 103 degrees. I couldn't get it to break for over 24 hours. What was going on with my poor baby? She hasn't been right for months, can we figure this out and get it taken care of? Her ears were fine. No coughing, no symptoms other then the fever. This time we're going back to the hospital for a catheter. Which made me realize that every time she pees she grabs herself. I just thought she was a genius and was already putting things together. She had been doing this so much that I even pulled out the potty chair. She's just a baby, what am I thinking?!? Neither one of us is ready for potty training. I also realized she hasn't had full diapers, mostly in the morning (after sleeping for 10 - 12 hours) and hardly anything during the day. I'd change her because it felt like it was time not because she needed it.

* * *

Dr. B. also asked about the rash. He obviously could see it, as small and "nothing" as it seemed at the time. "As soon as it starts coming back," he would say, "Call me so we can get you referred to Primary Children's."

* * *

Back we go to the hospital. We happened to have that day off from school, too. So of course I call my sister Tracy. (What a horrible way to spend your day off.) This one I was more nervous for then any old blood draw. That was cake walk to what they were about to do to my baby girl. I was scared for her. I was grateful for the support of my sister and the kindness of the nurses. I didn't like that I was getting to know them so well. I also didn't like the fact that the only time I saw my niece was when she was working at the hospital in the ER. Not cool. There certainly is a better time and place for a family gathering, isn't there?? (Love you, Brittany!)

* * *

After the first part of the catheter tube was filling little baby E totally relaxed and quit crying. The nurses commented on how bad this sample looked. She filled a tube, a large one, and they figure she's been holding it for quite some time. Isn't it amazing at that young of age they know to do that already? Dr. B. put her on medication for a UTI. He was a little worried because we're running out of antibiotic options for this little girl, with her allergies and all. He found one and it worked amazingly! (Dr's are so magical!) Before long she was peeing out of her diapers! In the morning she woke up soaking wet. It was sad and stinky but I was so relieved. We're now back to using the expensive diapers on this little one. They just work better, at night anyway. Finally, she was back to acting how she should. Normal and happy!

* * *

March 19, 2010

What to do? So the rash was growing, yet again. Colt and I were discussing over lunch when to call Dr. B. How many dots does there need to be? It fades and grows, do we really need to go down there? We know she's fine, do we really need to go? I called Dr. B. this afternoon, told him it wasn't nearly as bad as it once was but it's growing again. What do we need to do? Is she coughing? No. Puking? No. Straining herself so hard she could be making little blood vessels pop? No. He sent the referral down and called back the following Monday. We were headed to Primary Children's Hospital on Wed., March 31st.

* * *

Of course in the time that the appointment was made and the actual appointment her rash faded again. Never completely, but faded. And that raises the questions again. Should we go? Shouldn't we? The rash is there for a reason, right? And so on... It came down to me. I needed answers. I knew she was fine (nothing life threatening, at least) but there was a reason for the rash and what was it? I didn't want to live the next 6 months watching her rash, wondering if it was time and then cancelling the appointment because it had faded.... again. Then the day came when the hospital called to confirm and ended all questioning. We were going. Colt and I (mostly Colt) was so confident that everything was alright that he opted to stay home and work. You know, to pay for this expensive visit we were still unconvinced she needed, at this time, anyway.

* * *

March 31, 2010

It's snowing, of course. Such is the Utah spring weather. I headed down, a little anxious to get there and be done. I forget what Primary Children's is all about. It's a sick patient, bad sick, hospital. For children. Pulling in I found good parking. Not far from the "Bone Marrow Doner Parking Only" spots. Seeing that, and all of the slots filled, made me sick. I kind of started to panic. I parked, hauled the stroller, bag of goodies, Emma and her blankie into the hospital. Right when we walked through those rotating doors it hit me. Look at all of the people! What are they doing here? Who do they know here and why are they here? I had a full bladder and we were early so I was pleased to get some composure in the bathroom before heading to 4th floor Hematology/Oncology. The place I was least prepared for.

* * *

The moment I walked into the over crowded office I fought back the tears. It was so overwhelming seeing little ones with their bald little heads. Even smaller ones with full head of hair, just waiting to be seen. I signed in just after a man and his son that I rode in the elevator with. Under "New Patient" I put YES, that man put NO. His son could be no more then 5 years old. Again, I fought the tears. I briefly remember the lady checking me in. She took my insurance card and handed me two tags with Emma's info on it. One is for the hospital bracelet, I'm still not sure what the second one was for. She wasn't warm and fuzzy like most pediatric receptionists, but I suppose working in a place like that you can't be. She definitely had built a wall, not even returning one of my many - albeit fake - smiles.

* * *

I became angry at Colt. Only for a brief moment, mind you, but I was angry. Standing there fighting the tears, mad because I was there alone. Mostly mad because I knew Emma didn't need to be there. Not at this clinic, not with these children fighting for their lives. My Emma was fine and I wanted to turn around and leave.

* * *

I pushed the stroller through the cramped space, passing a young girl who couldn't have been more then 12 years old with hardly any hair, and worked into the small little sitting area. I sat with Emma and this young boy (who I was guessing had something wrong with his eyes, or something on his brain that was affecting the way his eyes sat) and his father at the little craft tables. I colored at the tiny table with my knees touching my chest while Emma stood. Stared. The father was putting something together, I really wasn't noticing. I was focusing on my coloring page and trying not to break down. Emma found the large markers and began relaxing. Kids were coming and going. Nurses saying "Look who's here!" as if their niece or nephew came for a fun visit. These people had obviously built relationships, my heart was breaking.

* * *

Another mom with her tiny - no more then 3 year old - daughter came in to sit with us. I watched the mom first. She went and sat in a chair over in the corner looking through a set of hard plastic drawers. She was pulling little baggies out, looking, putting them back. She found the one she wanted and brought it with her to the table. I noticed it was a kit of small beads, possibly to make a bracelet or something. My mind returned back to the drawers wondering if there was something I could take, not wanting to miss an opportunity. Looking past the drawers I saw a hat rack standing tall in the corner. It held, on different arms, different sizes, colors and patterns of small hats. The sign read "Please don't try on hats. Please feel free to take one." Of course in my overfilled mind I thought "Oh, we can take a hat, too." It didn't take long for me to realize those weren't for all patients. Especially not patients with an insignificant rash. I chastised myself, turning away. Noticing what seemed to be a 10 (or so) year old girl walking out with her mom, wearing one of those hats... no hair to be seen. My heart quickly desired to learn how to makes some of those hats to help replenish the hat rack. The hat rack I so greedely almost took from.

* * *

Not long after this mother joined us at the tables the father and son left. I began watching this womans little girl. (Later I learned her name is Angel.) She had thick, long, black hair. Dressed in dinosaur jammies at noon, she looked comfy. I noticed she had an IV cord hooked in and wrapped on her small right hand. After watching her and wondering about her I noticed the room straight down the hall from where I was sitting. It's the kind that you see on tv. On the news when they're doing special reports. On channel 11 when they're having Primary Childrens fundraising telethons. It was a room with oversized blue chairs, curtains hanging between each one. Children were sitting in them receiving chemotherapy treatments, some seemed to be laughing while talking to each other. I'm now wondering if this is why this little girl had that IV taped to her hand. My heart breaks more.

* * *

My mind pulls back to the present and I notice this mother making a tambourine. I realize this is what the father was making for his son. There are plenty of crafts at this table, this time I felt I could partake. With bells, markers, glue, and little confetti pieces. Emma and I (mostly I) made a tambourine. It helped. It kept my mind away from the clock. What was to come. What I didn't want to see down the hall. What I didn't know was going to happen. The not knowing is what eats at me. We finish our craft (Emma did marvelous!) and just in time.

* * *

The nurse calls her name and I pack things back into the stroller. The nurse takes her weight. Not very easily, I might add. Emma begins to panick. Remember a few (quite a few) paragraphs ago I mentioned that Emma really isn't a... people person? Well, she showed it here. She was flipping out. The kind nurse found a toy (a little Elmo phone) in a cupboard labeled "These toys are sanitary."

* * *

She then took Emmas tempature. It was a little high, she tried again on the other side hoping for a better result. Emma didn't like this side any more then the first, but the results were better. She's just warm, she's screaming her head off for Petes sake. A kind young doctor walked by and patted the top of her head. He was kind but unconsoling. Then comes the blood pressure cuff. On the leg it goes, she's flipping out even more. Her blood pressure was high. Are you really surprised, nurse lady? I look up and the not so warm and fuzzy receptionist was staring at me. I smiled a weak smiled as if to say "what am I to do?" She just stared back. I looked away. Nurse lady gave Emma a Tinker Bell sticker (which didn't help, I don't even think Emma noticed it) and tried the blood pressure again, it was still high. She said she was probably just stressed (again, really?) and they might want to take it again in the back. Please no, I'm thinking. She put a hospital bracelet on Emmas ankle. That made me a little uncomfortable. Not Emma, me.

* * *

She led us to the door of the clinic, I stopped to grab my stroller watching the children come in and out of that back room. I couldn't imagine being one of those parents being escorted back there. Nurse lady took us across the hall from this clinic to a different wing. I was so relieved to leave that place. I felt like I could breathe a little easier. She was explaining to me where we were going and what it was called. I don't remember what she said. I didn't retain the information because I didn't care. I didn't plan on visiting this place again.

* * *

In the room with the hospital bed on wheels (instead of the normal dr's office tables that are sat firmly on the floor) Emma stayed in her stroller eating gold fish crackers. She laughed and talked with "Lyes" (my sister Leslie) on her Elmo phone. She called Dad, and Papa (which means grandma and grandpa) and Trace. She was happy again. Then in walks the doctor. I'm not sure what I was expecting but it wasn't a she or a foreigner. She started talking and I quickly thought "Dang, I wish Colt were here. He talks to doctors all day and he understands them well. I sure hope I can." Well I did understand, and she was great.

* * *

She asked questions. Does she bruise easy? Not any more then any other 20 month old with bigger sibblings. Does she bleed often... from her gums? No. And other questions I didn't care to remember. She was fine. It's just this rash she's had for 4 months that hasn't gone away. Doctor was kind, she didn't want to poke around and find something that wasn't there. She was starting at the bottom. Possibly with another blood test, which I was prepared for.

* * *

She left and came back with another doctor. He took a look at her and eased any worries that we may have had, what she had was nothing to be concerned about. She would be fine. After hearing this and seeing what was going on around me I felt quite silly for even being there. I felt like I was almost wasting these precious doctors time knowing they had more serious cases to worry about. He talked to me about personal things in my life (yes, those woman things) and pretty much told me what it was right then. She has what they call Von Willebrands Disease. It is a bleeding problem, it has to do with platelet functioning and it will not change her life in any way. It is something good to know if she ever has to have surgery or anything major. It's just good to know and if it's a really bad case (which I'm doubting) all she'll need is medicine. She will be fine. Just as we knew she would be. He wants to have another blood draw when her rash is at it's worse. Thankfully we can just do this up here, I won't have to return to that hospital again.

* * *

I was able to breathe even better walking out of that hospital. It was still snowing and I didn't care. I was happy to go home and be with my family, knowing I didn't have to worry about this any more. Our prayers had been answered.

* * *

Emma liked her tambourine. (As she should, I'm sure it was an expensive one!) She liked to tease Tinker Bell with it.

It was a long day. She was so happy to be home, drool and all!!

Her new thing, chasing after the camera when I'm trying to take a picture. Stinker. In case you can't see them, she's got monster tonsils, too! Notice the Tinker Bell sticker.

the tambourine, the oh so expensive tambourine.

She did some of that marker herself. As well as the red heart and blue star.

Showing dad her hospital bracelet on her ankle.

Daddy and his girls. We're so happy to have our kids healthy!!

So you might ask "why all of the jibberish?" (If you've gotten this far, that is.) Simple. I don't want to forget. I don't want to forget what I went through as a mother, worrying and wondering. Wondering how far do I take this? How far is too far and what is just right? I don't want to forget what it was like, as a mother, to be so concerned about my baby that I was looking at her tummy every 10 minutes checking for the slightest change. Feeling, when health is threatened, that I would do anything to protect my child. I don't want to forget what it was like to be so worried about someones life.

* * *

I don't want to forget the experience I had at Primary Childrens Hospital, no matter how sad. It was surreal. There really are little kids out there living with horrible things, fighting for their lives each day. Going in for chemo with Mom instead of going to school. Having Dad push you in your stroller and playing little games on the way to make the horror that was to come as easy as possible. Doing it in a way as if it was something you did daily. Having him there for you when most Daddys go to work. I remember seeing the kids, every one of them in comfy jammies, a couple in hats to cover the bald little head, some not even caring and showing their bald heads with pride. And through it all every one of them was happy.

* * *

As I write this "journal entry" and the emotions I feel, Emma hugs me. Squeezes me with that grunting sound as if she's lifting something heavy. Over and over again she squeezes me. It makes me cry - just a little. Just enough to know how much I love her, how much I love being a mom. Nothing could change it. This is a dream I've had since playing with my baby dolls as a young child. I've always wanted to be a mom. I feel very blessed.

* * *

No matter the trials I face, whether it be another ear infection, strep throat, a rash, or just a child that will not mind, no matter what it could be worse. This is the reason for this super long post. I want to remember these things so I can remember - daily - how blessed I am. I love my husband, my kids, my life, my family, my friends, and my Heavenly Father and Jesus Christ. Yes, there are trials, but without these people I could not handle them. They all give much comfort in their own special way. And for that I am truly grateful.

Kierstead Family

Wednesday, April 21, 2010

Just Because

~ Family Pictures ~

Thursday, April 8, 2010

the story of Emma

Funny Kids