Saturday, January 31, 2009
I'm heartbroken for Emmy. That she has to go through this crud. That she is in pain and doesn't know what is going on. That I can't make it all better with a kiss, the way owies are supposed to be taken care of. I want to be laying in that hospital bed rather then her.
I'm heartbroken for Mari. She has a nasty chest cold and is absolutely miserable. I went home to pack some things for the hospital and to see Peder and Mari before they headed up to my parents. Mari followed me around, clung to me, snuggled me, and cried when I tried to pack my clothes. It breaks my heart that she is not feeling well and I can't give her the comfort and snuggle time she needs from her mommy.
I'm heartbroken for Peder. He showered me with love and affection yesterday and we had some nice chats while I was home. He kept telling me that he wanted to stay home and he wanted me. When it was time for them to leave I handed him off to my dad, he burst into tears and cried, "I want my mommy." Every time we talk to him on the phone he tells us he wants one or both of us. He doesn't understand what is going on and he just wants to be home and to play with Mommy and Daddy.
So I'm heartbroken and torn, because all my kids need me right now and I need to figure out how to be there for all of them. My parents are bringing Peder and Mari tonight and we're going to all go get dinner in the cafeteria and spend some time hanging out in the family lounge. This will give us a chance to spend some time with them and my parents can visit Emmy. We're hoping that once Emmy is out of PICU we can rearrange how we're doing things and one of us can be home with Peder and Mari every morning until nap time in the afternoon and then head over here for the rest of the day.
This has been a really hard thing for me. I miss my kiddos and I want to be there for all of them. I want to be able to do something fun and not worry about medical issues for awhile....
Tuesday, January 27, 2009
- I'm SO happy to be home and have all three kids within arms reach.
- I've never been so angry on behalf of someone else as I was Saturday night/Sunday morning on behalf of Emmy. I was finally calmed down enough today to tell our doctor about how angry I was at the on-call resident and how his actions made me feel. He told me that he will talk to him and it won't happen again.
- Be nice to your nurses, it results in FABULOUS care on behalf of your child or yourself.
- I was asked to be on the Parent Advisory Board at the University of Minnesota's Children's Hospital. There are 16 parents and 8 hospital faculty, doctors, etc. I'm thinking of joining.
- I'm exhausted. I really want to get back into a regular schedule here, but every time I try something big comes up that prevents it.
- I'm very thankful for the care our children receive from their medical providers.
- My parents are WONDERFUL! They met us at the ER at midnight on Saturday to bring Peder and Mari back to our house and have taken care of them during every one of Emmy's hospitalizations. They've been helpful both emotionally and by taking care of our kiddos.
- We got home today and someone from church had brought over food. She was hoping to get it to us before we got home. There were at least 3 meals of food in the bags she brought. Another example of the generosity of our friends and family.
- A friend just asked me about information on a medical condition that is similar to Emmy's. Her friend's son was born with it. I offered to talk to her if she wanted to talk to another parent...I would have liked that after Emmy was born.
- When I get down in the dumps I want to spend money. I've been showing great self-restraint.
- I'm SO thankful for my friends and family. These times would be even more difficult without their love and support.
That's all for now....Mari needs some cuddling.
Friday, January 23, 2009
Wednesday, January 21, 2009
I made the doctor tear up today. I told him that today would be the first time I'd every see Emmy's belly without stomas. She was flashed at me right after she was born and within minutes they discovered her medical issue. She was wrapped like a little burrito, I got to hold her and we took some pictures and then she was taken to the special care nursery. Later, before she left for Children's Hospital, I got to hold her again, but she was once again wrapped like a little burrito. So today, at about 3:30p, was the first time I had ever seen her with a flat belly. Anyway, he teared up when I told him that. Then I thanked him and gave him a hug....and his tears welled. An amazing doctor and I hope that today he knew how much what he does makes a difference in the lives of his patients and their families. Yes, he will be getting a gushing thank you card from me....he needs to know that I know how wonderful he is. And come to think of it, our pediatrician needs to know it too. A couple of doctors are going to get thank yous in the mail next week.
Today I am filled with love and joy. I think of the love that I am surrounded by and I tear up. I've cried tears of joy throughout the day today, because I can't contain the joy in my body and the only way for them to come out is in tears.
I have a wonderful family. A wonderful husband. A wonderful extended family. Wonderful friends. A wonderful support network. A wonderful church family. A wonderful life.
My life is JOY!
Tuesday, January 20, 2009
This is not the only reason my day is filled with hope. I have more hope for Emmy. Tomorrow is a HUGE day for us. This is the culmination of what we have been waiting for since we found out about all of her medical issues. Tomorrow is the day that she starts a colostomy bag free life. I cannot tell you how excited we are in our house. There are no words to describe how we are feeling right now. I'm SO excited for what the future holds.
So I will end today's post with a picture of Emmy's last ever bag change. The end of an era, and the beginning of a whole new way of life.
Monday, January 19, 2009
Emmy giving me a sweet, SWEET hug.
Sunday, January 18, 2009
Things you’ve already done: bold
Things you want to do: italicize
Things you haven’t done and don’t want to - leave in plain font
1. Started your own blog. (Hello!)
2. Slept under the stars
3. Played in a band. (I'm counting middle school band. I played percussion.)
4. Visited Hawaii.
5. Watched a meteor shower.
6. Given more than you can afford to charity.
7. Been to Disneyland/world. (Both.)
8. Climbed a mountain. (Mission trips to Colorado and Wyoming helped with this, but I don't think you should imagine me doing this great feat. They were "manageable" climbs.)
9. Held a praying mantis. (We always had them outside one of our houses growing up.)
10. Sang a solo. (In church plays, etc.)
11. Bungee jumped.
12. Visited Paris.
13. Watched a lightning storm at sea. (I've been on two cruises, saw a couple of storms come in.)
14. Taught yourself an art from scratch. (I'm counting scrapbooking, because I just kind of started doing it.)
15. Adopted a child.
16. Had food poisoning. (Numerous times. Why must I have such a weak immune system?)
17. Walked to the top of the Statue of Liberty.
18. Grown your own vegetables.
19. Seen the Mona Lisa in France.
20. Slept on an overnight train.
21. Had a pillow fight. (They are more frequent now that I have a rowdy 3 year old.)
22. Hitch hiked.
23. Taken a sick day when you’re not ill. (Mental Health Days ROCK!)
24. Built a snow fort.
25. Held a lamb.
26. Gone skinny dipping.
27. Run a marathon.
28. Ridden a gondola in Venice.
29. Seen a total eclipse.
30. Watched a sunrise or sunset.
31. Hit a home run. (Only playing wiffle ball in the backyard with my dad. But it counted then, so it counts now. :))
32. Been on a cruise. (Two....our honeymoon and a Texaribbean.)
33. Seen Niagara Falls in person. (One of my most favorite places that I've ever visited.)
34. Visited the birthplace of your ancestors.
35. Seen an Amish community. (Many a time. We went to Intercourse, PA when I was in high school. My grandpa thought it was GREAT!)
36. Taught yourself a new language.
37. Had enough money to be truly satisfied.
38. Seen the Leaning Tower of Pisa in person.
39. Gone rock climbing.
40. Seen Michelangelo’s David in person.
41. Sung Karaoke. (This used to be fun in college after a few drinks. Now I prefer going dancing.)
42. Seen Old Faithful geyser erupt.
43. Bought a stranger a meal in a restaurant.
44. Visited Africa.
45. Walked on a beach by moonlight.
46. Been transported in an ambulance.
47. Had your portrait painted. (Jake is really into art and drew me while we were on our honeymoon. It wasn't a painting, but close enough.)
48. Gone deep sea fishing.
49. Seen the Sistine chapel in person.
50. Been to the top of the Eiffel Tower in Paris.
51. Gone scuba diving or snorkeling. (We went snorkeling when we were swimming with the Sting Rays on our honeymoon. I'm not very good at it and get claustrophobic.)
52. Kissed in the rain.
53. Played in the mud. (My sister and I had a FANTASTIC time doing this when we moved into our new house between 7th and 8th grade. The yard hadn't been landscaped yet and after a HUGE storm we went and made complete messes of ourselves.)
54. Gone to a drive-in theatre. (Many times. I think we went 3 times last summer alone.)
55. Been in a movie.
56. Visited the Great Wall of China.
57. Started a business.
58. Taken a martial arts class
59. Visited Russia.
60. Served in a soup kitchen.
61. Sold Girl Scout cookies.
62. Gone whale watching.
63. Gotten flowers for no reason. (I rarely get flowers for a reason. Jake prefers to give them to me "just because" and just to make me smile. I think they only time I ever got them for a reason was when Peder was born. I would have gotten them for the girls too, but his mind was on other things.)
64. Donated blood.
65. Gone sky diving.
66. Visited a Nazi Concentration Camp.
67. Bounced a check
68. Flown in a helicopter.
69. Saved a favorite childhood toy. (My teddy bear Butterscotch. He still sits on Peder's bookshelf)
70. Visited the Lincoln Memorial.
71. Eaten Caviar.
72. Pieced a quilt. (I made one for Jake our first Christmas together, helped my mom make one for Jake, made one for my mother-in-law and a photo quilt for Jake's grandma.)
73. Stood in Times Square.
74. Toured the Everglades.
75. Been fired from a job. (My first one. I was fired the same night that I "saved a life." So I think it was a fair trade off.)
76. Seen the Changing of the Guard in London.
77. Broken a bone. (Many. My middle finger, my thumb twice, pretty sure I broke my tailbone and I separated my pelvis.)
78. Been on a speeding motorcycle. (My guess is that my dad didn't always go EXACTLY the speed limit every time I was on it with him.)
79. Seen the Grand Canyon in person.
80. Published a book.
81. Visited the Vatican.
82. Bought a brand new car. (My mini-van. It will be with me for many years.)
83. Walked in Jerusalem.
84. Had your picture in the newspaper. (Another small town girl.)
85. Read the entire Bible.
86. Visited the White House.
87. Killed and prepared an animal for eating.
88. Had chickenpox. (I was a year and a half old. I've also had shingles, I think I was 6 or 7 for that one.)
89. Saved someone’s life. (Not in the traditional sense, but it's enough for me.)
90. Sat on a jury.
91. Met someone famous.
92. Joined a book club. (At my church. Love it!)
93. Lost a loved one. (I've been lucky and so far have only lost my two great-grandmas that were alive when I was born.)
94. Had a baby. (Three. I got a two for one deal with the second pregnancy.)
95. Seen the Alamo in person.
96. Swum in the Great Salt Lake.
97. Been involved in a law suit.
98. Owned a cell phone. (We don't even have a land line.)
99. Been Stung by a bee. (A couple of times, but I think it's been 10-20 years since the last time.)
Already done – 51
Want to do – 35
Haven’t done, no interest - 13
Saturday, January 17, 2009
This is a picture of Jake and his older brother John on a Texaribbean cruise we took in March of 2005. We got all gussied up for the formal night on the cruise and this is a picture of the boys in their suits. I'm pretty sure that Jake forgot his dress shoes so he's wearing tennies or something. I was 11 weeks pregnant with Peder on this cruise, had horrible morning sickness and two days that we were at sea were EXTREMELY choppy. We had a great time! I LOVE CRUISES!
I'd love to see your pictures! This is kind of a fun thing!
Thursday, January 15, 2009
Then Mari has been sick. She has had diarrhea and actually vomited this evening. We ended up taking her in to the doctor to get checked because she was dealing with such horrible chills and her hands and lips were purple.
Jake is still battling his illness, whatever it is.
I had my first physical therapy appointment this afternoon. It was painful and I learned that because I've been compensating for the pain in my left hip so much that I created issues for my right hip. The exercises she gave me are barely anything, but they send me into a great deal of pain. She also gave me new ways to sit, stand and get up from sitting to help retrain my muscles and get my pelvis more stable. She said it's going to be painful, but hopefully we can get it stable and strong. Then she said if I get back into working out that will help stabilize it tremendously. So back to the lifestyle change I made before Emmy got sick over the summer, and I will need to exercise consistently for the rest of my life.
But I'm trying to stay positive. I'm trying to look at the positive in my life and look forward to the good things. I don't want to be whiny. So here are some things that are good in our life and things we have to look forward to.
1. We have a wonderful support system. Our friends and family are SO great to us.
2. Saturday we get to go out to a really nice restaurant with my aunt and uncle. We always laugh with them and it will most definitely be a good time.
3. Emmy is having surgery next week and will no longer have a colostomy bag. What a POSITIVE step.
4. In February, Jake and I are taking a long weekend and heading to Stillwater for 3 nights. We are VERY excited for the opportunity to reconnect, do some fun things together and just hang out together. We've had 2 opportunities for "dates" since Emmy got sick in July. We need this!
5. In February I am taking a long weekend and going to a scrapbooking retreat with my sister-in-law. I am really looking forward to a weekend with a group of ladies who share the same passion as I do. SO FUN!
6. Our children are beautiful, wonderful and sweet. The cute incident of the day: Jake gave each of the kids a milkbone to give to Jesse. Emmy could care less about doing it, but Peder loves it and Mari was interested. Mari gave Jesse the milkbone and Peder gave her a hug and kiss and said, "Good job Mari! I'm SO proud of you!" How cute is that?
So that's a start of what I can remind myself of when I'm starting to feel bummed or just overwhelmed. I KNOW this illness will end, even if there doesn't seem to be an end in sight.
Wednesday, January 14, 2009
The girls had their 18 month appointments this morning and can I just say how NOT fun that was? Mari was crabby all morning anyway and then she just was not happy about others touching her right now. And Emmy, of course, hates all things medical so she screamed through her whole exam too. At least we got a bit of a comedic break. Mari was so upset about having to get weighed that she refused to sit down, so she was standing on the scale, on the counter top, buck naked just crying. She couldn't get her diaper back on fast enough. Somehow, 5 minutes later her diaper was off and she was walking around the exam room buck naked again. That girl LOVES running off diaperless and now her clinic knows it.
Emmy's weight is still a concern. This morning she weighed in at 17 lbs. 5 ounces. Last week she was 17 lbs. 12 ounces. So once again she got the stomach flu and went back a step. It's very frustrating for us because whenever she makes any progress something happens where she is either hospitalized or gets sick and she loses whatever weight she has gained. Since June of 2008 she has gained a pound. She's actually been up over 18 pounds a couple of times, but we can't seem to keep that weight on. It's VERY hard to know what to do.
On the upside, in one week, ONE WEEK, she will no longer have a colostomy bag. SERIOUSLY! Without the colostomy bag, our hope is that if she gets sick it won't affect her the same and she'll not have as hard a time with it since she'll have use of her colon. I'm so excited! Of course, there is the nervousness that goes along with any surgery and the deep fears that go with it, but this is the surgery we've been waiting for. SO EXCITING!
Tomorrow I have my first PT appointment for my pelvis. Wish me luck! I'm really hoping that tomorrow is the first step in a wonderful recovery process.
This Saturday my parents are taking the kids and we're having our "Christmas Party" with my uncle that I do administrative work for while the kids are napping. We're going to the Downtowner Woodfire Grill. A nice dinner out, a good time and the kids having fun at Grandpa and Grandma's....it will be a GREAT night!
Last night was book group at church. I love those ladies (hi there my other bloggers!) and I love the discussions we have. Right now we're discussing a book on how to revitalize our church. It's VERY interesting to see where people think our church needs to grow and what the strengths are. Last night was just such a good discussion. I went to book club feeling cruddy and exhausted and I left still feeling exhausted but my soul felt lighter. It's SO great to have that.
I want to end today's post with some of my favorite Peder quotes of late. He is constantly cracking me up with his very adult sounding responses to things. So here are some of my favorites:
"Okay, sounds good!"
"I think it's a good idea."
That's all for now! Thanks for the encouraging notes, they reall do help!
Monday, January 12, 2009
Jake is SO sick. SO sick. He went to the doctor today and got some cough syrup, but still has a temp of over 102. He thinks he is getting worse as the day goes on. I was talking to him and told him it wouldn't be so bad if he was the only one sick, but alas that is not meant to be. He has been sick 3 times in the last ten years, and two of those times have been in the last month. Both times, I have had at least 2 sick kiddos too. Here is a picture that I took of Jake after Peder had tucked him in yesterday. Jake fell asleep on the couch and Peder brought his sheet and covered Jake up and snuggled his favorite kitty up to him. SO SWEET!
On to the next sicky. That would be Emmy. She has had diarrhea for two days now and then this morning she started throwing up. She threw up 3 times and I think may be on the mend, but for most of the day she was miserable, sitting on my lap and snuggling with me. At one point I set her down on the chaise lounge so I could do a couple of things and I came back and asked her, "Are you ready for Mommy to come sit by you again?" She looked at me and gave me a HUGE nod and smile. It was so sweet.
Peder and Emmy sitting on the chaise watching a movie. One of the few times Emmy wasn't clinging to me or Jake.
After dinner I had both girls clinging to me. They both really needed some Mommy time. It turned out that Mari was needing Mommy so badly because her tummy was upset too. She ended up throwing up several times this evening too. So we had two very sick girls and one very sick hubby tonight.
Peder has been pretty good today, but he still has a nasty cough and a somewhat runny nose. At least he has been super sweet about all the other sickies in our house and giving out lots of love.
After the girls were in bed and we had one last clean up session with Mari, I did all the dishes and got Peder ready for bed. Once he was in bed I bundled up and headed out to shovel the sidewalk. I had already been in pain for most of the day, so I took some pain medicine right before I headed outside. When I got back in I told Jake he better get better before it snows again because I can't do that again until my pelvis is better. Luckily one of our neighbors (actually 2 houses down) has a snow blower and cleared the main part of our sidewalk for us. Tonight, they are my angels.
So now, I sit. I'm eating popcorn and sitting under my present I got today. While Jake was waiting for his prescription at Walgreens he found something I've been wanting for months. A Snuggie blanket: the blanket with sleeves! He walked into the house, handed it to me and said, "Thank you for taking care of all of us." I burst into tears. It was SO sweet and just what I needed to make it through the day. I want one because of all the cross stitch I do....it's the perfect way to stay warm and still be able to work on my projects. I LOVE IT!
Now I just need to figure out how to get 61 pages read in my book group book without falling asleep. Not going to happen. :)
Sunday, January 11, 2009
Since I finally woke up with some energy today (I'm shocked, it's been over 2 weeks since I've had energy to do anything) I've been trying to get things done around the house. I spent the morning finishing up thank you cards, working on laundry, going through the girls' clothes to get rid of things that are too small and purging toys that haven't been played with in several months. So by noon I had gotten A LOT done, which was good because that was about the time that the pelvic pain wasn't letting me get any more done. I'm taking a small break now until the medication starts to kick in. Then I need to head upstairs and fold that laundry I've been working on. Fun, FUN!
Peder has been really cute today, taking care of his daddy. He always takes care of us when we aren't feeling well. If we fall asleep on the couch he will bring a blankie over and tuck us in. Every time Jake coughs Peder asks him, "Daddy are you ok?" He really is the sweetest, most caring boy I have ever encountered. Mari has been snuggling Daddy a lot and Emmy will come over and just hand out a big hug. Everyone is so stinkin' cute, it's SO easy to love them.
So here's hoping that Jake has a speedy recovery and that Peder, Emmy and Mari are on the tail end of their colds. I would really love for everyone to be healthy a couple of days before Emmy's surgery so that is a weight off of my mind.
Wednesday, January 07, 2009
I got to talk to someone besides Jake or my family about my excitement for Emmy's upcoming surgery and concern for what the future holds when it comes to future surgeries. I also got to vocalize my concerns with my current level of pain when it comes to my pelvis. I talked a lot this week, apparently I had a lot I needed to get off my chest. I've been down in the dumps because of the level of pain I'm in and because we haven't had a healthy house since December 16th....someone has been sick since then.
Anyway, I got my soul fed and am hoping that will help me get over this crud I've been fighting. Besides being grumpy about being sick and in pain, things are actually going pretty well around here. I love my little family and every day feel overwhelming love and joy. I got home from book group last night and went to say good night to all the kids (they were all awake in their beds). I got a great, "HI MOMMA!" from both of the girls when I walked into their room and they both instantly reached for me for hugs. Then I told Peder I was going to come and tuck him in and he got a HUGE smile on his face and went running back to his bed. I said good night to him and we both shared a long belly laugh....I love that I'm SO hilarious to these kiddos. Then I got to spend some time chatting and snuggling with Jake on the chaise lounge. LOVE IT! An exhausting day, but it ended perfectly.
Monday, January 05, 2009
The Kreativ Blogger Award asks that you list of 6 things you are thankful for and pass it on to 6 other bloggers.
The things I am thankful for:
1. My family - including my supportive husband, my beautiful children, my helpful and supportive parents and sister, and my wonderful extended family that are always thinking of us.
2. My friends - From past to present, I have wonderful, understanding and supportive friends
3. My church - I've never met more generous or giving people in my life, especially with love, thoughts and prayers.
4. My hobbies - These are my sanity savers, I would lose my mind without the ability to scrapbook, do cross stitch, read a book or any of those other things
5. Access to wonderful medical care - Enough said. Thank God for superior doctors and medical care.
6. Small joys - I love being reminded every day of how good I have it.
The Lemonade Award says to pass it on to 10 other bloggers that show attitude and/or gratitude.
I know some of you bloggy friends have been given these awards already, but that makes you no less worthy of them.
3. Beth (I think you deserve them from me too. This is to show my appreciation of you, don't pass them on again. :))
4. Jill K.
5. Jill C.
I don't have many blogging friends, but the ones that I do have are great! So there are 5 rather then 6 or 10, but they are all deserving women!
Sunday, January 04, 2009
I've been asked by several people how I find time to get my scrapbooking done and make the cards that I do. The answer is simple: Jake. He is more then willing to hang out with the kids all day so that I can take a break and spend time in my scrap space. Other ways I get time to do my "fun" stuff: I wake up before the kids every day and either work on my fun stuff or the cleaning for the day OR I work on stuff while the kids are napping or after they have gone to bed. Yesterday I had a day when Jake spent the day hanging out with the kids and I went upstairs and scrapped away. I played with my new Cricut die cutting machine and completely fallen in love with it. What a wonderful investment!
We also worked on laundry yesterday, which was in great need to be done. It was such a relief to get that done.
I've been writing out a million thank yous from Christmas. Our kiddos will each be adding their "signatures" to the thank yous once they are written. I think I'm about half way done...it seems like a daunting task right now. Another nap time project. :)
My other big project that I've been working on is a birth record cross stitch for our nephew that is due in April. This pattern is from a different company then I'm used to and when I started working on it I was worried that it was going to be confusing. Luckily although parts of it are hard to follow (weird symbols all over the place) there aren't very many colors, so that makes it a little easier to figure everything out.
I've been feeling joyous lately, but I've also been unable to keep up with things I want to do...like keeping in contact with some of my friends. I'm hoping that since we will be getting back to our normal schedule starting tomorrow that I'll be able to get back into.