Happy New Years

Another day and still at the "spa." We are in a new room (again) that is bigger. They had some rain issues and moved us, but it's very nice, like usual. Brooke is still on nebs every 4 hours for her breathing. They feel her breathing is doing better. She still retracts some and breaths heavier but that will take time to get better. She is still vomiting and they don't know why. We need to get off IV bactrim (a strong antibiotic) to oral bactrim to be able to go home. We hope in the next 2 days to try oral medications. So we wait :)
Steve decided he was staying at the spa for New Years. I protested but he tricked me by taking all the girls up to the hospital and saying I had to take them home to their friends houses. Crazy man!! So I will go with the girls to the Koops and bring in the New Year with them and the Potters. Steve will hang out with Brooke and the nurses at the "Spa." This is the first time in 16 years we haven't been together on New Years. First time for everything. As long as he doesn't kiss someone else we are ok :) 2009 will be new experiences but I wouldn't say better than 2008. We got the 2 most BEAUTIFUL babies in 2008 and are surrounded by the most loving family and friends. We couldn't be more blessed and thankful. Happy New Year everyone.

"For the sake of the Children"

That has been my favorite saying for a long time. It's not always used in a good way :) I promised my 4 beautiful girls a "normal" day yesterday. Church, eating at grandma's, making cookies. Whatever they wanted. We awoke to Ashley vomiting over the railing of her top bunk into Megan's bed, it was actually comical, I wish I had a camera at that moment. So no church or grandma's. Plan B: pj's all day, fun breakfast, movies, baking. Then I found some/alot of water in my basement. I cleaned up what I could, washed what needed to be and shut the door. I didn't have time or really care to deal with it. I told Steve there was "some" water and left it at that. Steve was at the hospital with Brooke, and she had vomited again most of the night. So he needed rest, as did she. I told Lisa my sister in law, there was a little water, and her and Mark came to suck it up. That wasn't going to work, so he called Jon, my brother in law, and he and his girlfriend changed their plans to help us rip up carpet, tear out the pad, vacuum up water, and Jon built a little dam for our small river. In the mean time my parents came to drop off stuff, and our friends Phil and Tricia came, so Tricia put my kids to bed and Phil took me to the hospital and Steve and I did the switch. So now Steve is home with another vomiting child and watching the dam in the basement. And I can't forget, Tricia is now ill. Why not spread the wealth!!! How many people does it take to take care of us Koeman's??? Obviously alot!!! THANK YOU EVERYONE!! I feel so blessed by family and friends. You all help me keep my sanity and laugh. Since that is all we can do. I figure the water just damages "stuff" and we don't need it anyway. The stomach flu doesn't last long.
Brooke's night was still rough. Vomiting again but only with tube feedings. Today they will do an upper GI to see what is going on in there. All the doctors came in and she looked at them so concerned and cried. She is well aware of her surroundings. Thank you for they prayers and help! People ask what they can do and I am lost as to an answer. Steve and I only plan one day in advance. Who knows what happens in that amount of time. Everyone is so caring! Why do we do all this........"for the sake of the children." Thanks!!!!

Spa day 3

Brooke's new tube! She wears it with a smile :)

Brooke had a rough night Friday night. The feedings didn't go as planned. She was uncomfortable and unable to sleep. She was fussy and just couldn't find it. They stopped the feedings for 2 hours and then restarted it, and then they slowed it down. Tonight they will run it slower and see how that goes. She did not want to eat today. We tried 2 different kinds of formula and pedialyte. She gags on it. Tricia came up and got her to take one ounce. YEAH TRISH!!Other than that she is happy and winning every one's heart over. This coming week she will meet with a dietitian and a speech therapist to watch her swallowing. They may also do a swallow study. So that's our upcoming week. Steve is there tonight, I pray he and Brooke get a good nights sleep. The other girls and Steve got to go to the Koeman Christmas party at the aquatic center. They had a blast!!

The girls jump roping at the Hospital.

We moved!!!

We moved :) Not very far but we are no longer in ICU. We are on the hemotology/oncology floor. They gave us a bigger room where all of our little monkeys can play. Today we had all the girls here to open stockings and play. Hopsitals can be VERY entertaining. Brooke is progressing well. Her respirtory status is some better. Still on breathing treatments and IV antibiotics. Today they put a feeding tube in to help her with eating. She doesn't want to eat and you can't make her. I have NOOOO idea where she gets so stubborn (must be Steve :) During the day she takes bottles (if she wants) and at night they do tube feedings from 9p - 9a. We'll see how that goes. Always something new with our Brookie. I hope everyone is well and had a great Christmas!

Christmas Pictures

Brookie Bear and Macy Monkey got hats.


The Koeman Christmas at Spectrum

OHHH SO HAPPY!!

Look what I can do!!

What a wonderful day! Brooke had all her sisters up here, both sets of grandparents, Uncle Mark, Aunt Lisa, Ryan, Seth, Bradley, Uncle Jon, Cassie, Uncle Brent, Aunt Lynn, Avery and Mya. The girls got to open a gift from grandpa and grandma Blueberry. Fuzzy robes and socks, how fun!!! Brooke and Macy got gifts from people that brought them to Spectrum. Blankets, quilts, stockings, stuffed animals, toys and books. We are Blessed!! It's not where you spend Christmas it's WHO you spend it with! (Thanks Kerri-Sue) And thanks everyone for making our family Christmas special! The visits, emails and phone calls are cherished!

A Christmas to remember

Merry Christmas from the Spectrum Spa! Brooke has had a cold for 2-3 weeks. Being the annoying mother and nurse I am I have been taking her pulse ox for over a week and it's been 88-91% (too low). We had her to her pediatrician office Saturday and they figured it was due to the congestion in her nose. Lungs sounded clear, so we suctioned her nose and treated it like a cold. Well, in true Brookie fashion, we came to clinic Wednesday, 12/24, for her "quick" visit and chemo and we are still here :) Her pulse ox was lower yet when we got here, 79% at one point, and she was retracting and grunting (all bad respiratory terms :) They did a chest xray that showed pneumonia but they wanted to know what kind. We were brought to peds ICU where they did a bronchoscopy. They put a small tube in her lungs and "washed" them and took a sample of the mucous. It came back pneumocystic pneumonia. It's a type of pneumonia that happens due to a decreased immune system from the steroids and chemo. So, they know what it is and she is being treated with IV antibiotics. She was also dehydrated from not wanting to eat, so she's had IV fluids. She is looking better, much more active and smiling. One of the doctors was just in and is impressed with her progress. No answer on when she will get to come home. Patience!!! We are Blessed to have her, so if this is where she needs to be we are ok with that. The other girls are doing well. A little disappointed they didn't get to see if Santa left things in their stockings but my guess is he did. Merry Christmas everyone and God Bless! The Koemans are TRULY Blessed and feel God's presence! He is the True meaning of Christmas!!! And we are grateful every day!!

An end in sight (hopefully)

Brooke had labs yesterday. Hemoglobin was 13.1. All other labs were pretty normal. The best we've seen so far. YEAH!! This past weekend she was vomiting from the IVIG and chemo. The MD increased her steroids but only for a day and then we weaned her back down to once a day. She is still vomiting about once a day and not wanting to eat. So we wait. Eventually she will eat :) She goes back to Spectrum Clinic next week for chemo.
The girls got their Christmas Tree and there are presents under it. The anticipation is driving them nuts. It is so funny to listen to them talk about their presents and re-arrange them. The innocence of children at Christmas!

Early Christmas!

Steve and Brooke were at Spectrum yesterday. Her hemoglobin was 14.1. WOW! Her labs look good and the MD feels she is doing this on her own. PRAISE THE LORD! We get to decrease her steroids. They also have a plan in place to get her totally off the steroids. This takes some time though. She had a reaction after her IV antibiotics and screamed for half an hour. She seems to be doing well today. She is content and smiling. She doesn't eat much but we expect that after chemo, IVIG and antibiotics. She feels heavier to me, but the scales don't show it :) Wishful thinking! Steve and I couldn't be happier with her progress, as is the rest of the family! I saw a t shirt that said "one tough cookie" and I thought of her. (too bad it was too big.) Next week is just labs and no Spectrum again. What shall we do with all of our free time? The girls think they need a Christmas tree. Thanks for the prayers and support! We just got the only present we ever wanted! Merry Christmas!!

My elves

Send your own ElfYourself eCards

33 days and counting

Sorry for the lack of updates! Brooke has not had a transfusion in 33 days. We got to have a "normal" week, for lack of better words. We did not even test her blood this week. She is pink and mostly happy. She still has such a hard time sleeping. She is WIRED!! The steroids she is on does a number on her system. We give her meds to help her sleep and then she does ok. She has been grabbing at toys and playing with Macy. She loves her sister. She is definitely not as strong, but we hope she will slowly catch up. She has been eating better but doesn't grow. Steve and I are enjoying our "little" baby because we know it won't last. Next week is her long day at Spectrum with IV's. Steve says it's his turn and he's going to sit up there. The nurses love to watch him cater to her :)

The girls got to hold baby Madelyn Balder. They were so excited for another baby :) We LOVE babies around here.

The girls and I on Grandpa's sleigh.

Grandpa and Brooke napping on Thanksgiving.

A+++++

Brooke got an A+ today at clinic. So young and yet so smart :) Her hemoglobin was 13.1. WOW, it went up!!! So far this is the longest she has gone with out a transfusion. 24 days!! She is on the anti nausea medicine and is happier and eating better. She still isn't gaining weight, but she isn't losing either. We don't have to go back to clinic for 2 weeks. That is also the longest we've been away from Spectrum. Not that we don't enjoy seeing them.

This is a picture of her Broviac. Not sure everyone had seen it yet.

On another note: we are excited out friends, Gregg and Sarah had a baby girl!! Yeah, someone for the twins to play with. We get to meet her tonight!

Change in plans!

Our fun Saturday was to consist of Wedding showers and High School Musical plays. But Brooke didn't feel good. We had some vomiting on Tuesday and a bulging soft spot on her head. We've talked to the MD and have been watching it, but she started vomiting again Friday night and Saturday am. I called the Spectrum MD and he said to keep watching but when I got off the phone her pediatrician called me and had been thinking about her and checked into somethings and wanted her checked out. So Grandma to the rescue and took the big girls to their play (that I REALLY wanted to go to) and Steve, I, Macy and Brooke to Spectrum ED. They did blood work and CAT scan. All looks ok. They are thinking she is having a reaction to the IVIG she had recently. Her soft spot is still bulging, she's not eating and sleeps alot. If she isn't sleeping she's screaming. They think maybe headaches from the IVIG medicine. We wish she could tell us how she feels or that we could take this pain away from her. She is a tough little girl. We are so blessed with wonderful family and great doctors. What doctor calls on a Saturday that they are not working just cause they are thinking about our Brooke!!! We will keep holding and loving her!! Don't worry Macy gets her share of holding too, if not she screams (only because she is mad :)

Good News!

Good news at the Koemans!! Brooke's hemoglobin stayed up at 12. So it's been 17 days since her last transfusion. Her "record" is 21 days. She had IVIG today, the doctor feels that is what is helping to keep her levels up. We also got to decrease he steroids again and her chemo starts now every other week. SOOOO, we have cut everything in half from where we started: chemo and steroids! PRAISE THE LORD!!!! She was so happy today, smiling and laughing.

The other good news is Steve is done with harvest. It has been a long battle with mud and snow this fall. We have had between 15-16 inches of rain and 14 inches of snow since September 1. The last 110 acres had to be harvested by another combine with tracks on it. Another year of crazy weather, we will be praying for better weather for next years crops.

4 1/2 month physicals

Thursday was another clinic day. Grandma Blueberry came with us. Brooke's hemoglobin was 12.4. It stayed up another week! We weren't able to decrease the steroids but we are able to start doing chemo every other week. Hopefully that will be easier on her tummy and make her feel a little better. The Dr. feels the IVIG is helping to keep her hemoglobin up. So she will get that again next week. It's a 7-8 hour transfusion but worth it. They can only give it every 21 days.

Today the girls had their 4 month physicals. Brooke is 10#, 21 1/2" long. Macy is 15# 6oz and 25 1/2" long. A slight difference :) They are both hitting all their milestones, with the exception of Brooke and eating. The doctor increased her formula again so it's higher calorie. Even though she is not on the growth chart her height and weight are consistent with each other. She is just our little peanut. We also found out she had a really bad ear infection. We aren't sure if she had any symptoms because she always has some fussiness and doesn't eat well. So hopefully that will clear up soon with antibiotics. Thanks for another week of prayers. We realize daily how blessed we are and treasure all our time with all 5 girls.

The Perfect day!!

Brooke's hemoglobin was 13.5!! WOW!! We have only seen that number once before with her. So, obviously, the blood transfusion and IVIG are doing their work. She is also producing more red blood cells again which helps. She ate 12 ounces yesterday and is doing well today. 12 ounces is good for her. Now if that was Macy we would worry! She has hit 10#. So once again, the waiting is on. We pray she starts to gain more weight. If all goes well next week we will get to decrease her steroids again. She is currently on 9mg of steroids a day, chemo weekly, folic acid daily to increase her red blood cells and zantac to help her poor tummy. Thanks for the prayers. They are all cherished!!! We are so blessed!!!

Brooke's way!

We have decided life is Brooke's way or the highway. We checked her hemoglobin this morning and it was 8.1. So, to say the least, she needed blood. I did not plan on this today so that lead to a crazy morning since I was at work. But all worked out. The Lord puts everything and everyone where they need to be and Brooke gets her way! The Dr. said she needs to start producing more Red Blood Cells. Her body gets tired and she makes the "normal" amount. So we wait. The next blood draw is Thursday. I am assuming that should be good since she just got blood. But it's not up to me. God is in control and continues to take care of us.

Happy Halloween

It's taken me a little longer to post updates. We've been having too much fun :)
Brooke's hemoglobin was 9.5 yesterday. That was ok. The doctor said if he gives her a transfusion the antibodies will just destroy them so he have her IVIG transfusion and chemo and is hoping that will boost her hemoglobin up without a blood transfusion. If her hemoglobin stays up next week we can decrease her steroids again. That would be nice. She was sad tonight, didn't want to smile and had a sad cry. The IVIG causes headaches, tired and achiness. Hopefully tomorrow she will feel better. If all goes as planned she won't need a transfusion for another 3 weeks or so. We just have to wait and see. By then Steve will be done with harvest. The pictures are of nurse Candy and Carrie talking with Brookie. And then Macy "patiently" waiting in the chair for her sister.

All the craziness didn't stop us from Trick or Treating. Wednesday night at church, Thursday night at Appledorn assisted living and Friday night at Grandpa's and Grandma's. Can we say sugar overload!! But all the girls had fun.

Brookie's update

Life has been crazy busy lately! With Steve working alot, the girls and I are busy busy! Mom with 5 girls. How crazy is that :) Any way, Brooke has done well. She made it 3 & 1/2 weeks with out a transfusion. Monday night she didn't want to eat anymore. Tuesday my mom babysat, and bless her heart, she fed her 1 ounce every hour to get her to eat. Grandma's have the patience. So yesterday we drew blood and she was at 8.2, so she had blood and chemo on Wednesday. She is so much more alert and smiling when her numbers are up. She is still a peanut at 9# 13 oz, so I just savor the cuddling while I can . They are both starting to "talk" and babble. It's so fun! Next lab draw is Monday unless she needs one sooner but we hope not. The older girls are off school for a few days so it's time to relax and have no schedule for a few days.

Good News!!

Thursdays numbers were again good!! 10.6! She is holding her own so the Dr. said we could decrease her steroid to 3 times a day. YEAH! Maybe she'll feel a little better. Right now she has really chubby cheeks and her skin is dry from the steroids. Along with being sore which she can't tell us with out screaming. Most days she has a really concerned look on her face. Anyway, they gave her IV antibiotics again to help protect her lungs. She had a reaction to those and screamed crazy, turned really pale and her oxygen level went down. So she didn't get the full dose. Once they stopped them she did better. I asked the MD if this is "going away." (Our dream :) He said not yet. She is currently compensating for it. The meds have helped her body realize it is there and that it has to make extra red blood cells to keep up. The plan is if she continues to keep her hemoglobin up she can have chemo every other week instead of every week.

Her weight is still at 9# 12 oz. She eats small amounts but it takes all her energy to make the extra blood cells, and with steroids and chemo she doesn't always feel like eating. This has her pediatrician concerned some. She is on a high calorie formula. Steve and I know our babies and they have never been small, so we feel she'll catch up. Macy is 14# 10 oz!! There is a 5# difference. People don't even know they are twins, which is ok. They have their own individuality. God has given us the peace that this is in His hands and His timeline. "Don't let your hearts be troubled. Trust in God and trust in me." John 14:1

We are trusting in Him!

I posted some pictures of her nurses at Spectrum. Jon takes her vitals and blood. Chris runs the clinic and watches her while she gets transfusions and IV's, Chris also runs around with Macy as she works. She's good at multi tasking. (Carrie escaped the camera, we'll get her next week :)

The Monday Report

What a weekend!! The girls got to pick their big pumpkins! They decided in June since mom was too big to plant the garden they would plant pumpkins and boy did they grow.

Steve, even though super busy with harvest, got to go to therapy (which is hunting) with the Plaggemars. They had a great hunt which put a smile on Steve's face again. That makes the whole family happy :)

The girls got to go ride the combine. I'm sure there will be many more hours of that to come the next few weeks. Ashley and Megan like to sing songs in the combine. Music to Steve's ears!

Last but not least Brooke's hemoglobin was 10 to day!! Again we are so blessed!! It is 2 weeks today since her last transfusion. I have to keep reporting her weight to her pediatrician. He does not feel Koeman kids should be in the 3rd percentile for growth. At this point we are happy with any progress. God is so good and we are blessed with 5 beautiful girls and lots of fun times together.

"JAZZ HANDS"

JAZZ HANDS!!! That's what Steve tells the girls when something exciting happens. They jump around and shake their hands in the air :) Today Brooke's Hemoglobin was 10.4 That is so good! She hasn't had a transfusion in 10 days. That is the longest she's gone yet. Her weight is up to 9# 12oz. She also gets REALLY mad if she's hungry and you don't feed her RIGHT NOW!! (That must be the Steve in her :) We are happy for the progress.

HAPPY DANCE!!

Brooke's hemoglobin was 10.4 today. YEAH!! This is the longest she has gone with out a transfusion since this all began August 10. That is progress. She is happy, talking alot, smiling and eating. What a fun week! The doctor said just take it day by day. So we will. Our next appointment is Thursday at Devos. She'll get her chemo and have more labs. Thanks for the prayers. They are definitely felt!

Brookie Bear

Steve and Brookie went to Spectrum today for her chemo and blood test. Her hemoglobin was......12.o!!! YEAH!!! The IVIG and blood they gave her on Monday is helping!! We understand that she will still need transfusions BUT it was so encouraging to only have one this week. This is just a glimmer of hope. Since this all started on August 10 Brooke has had 15 transfusions. That's alot of blood! We have a new appreciation for anyone that donates blood. Brooke eats better and is more alert when her hemoglobin is normal. She still has occasional screaming fits from the steroids. We just hold her and love her. We can't take the pain away but we can try.

I also have posted a picture we got taken of our girls a few weeks ago. They are so much fun and we are so blessed! God is so Good!

The Spectrum Spa!

Here we are again! Brooke's hemoglobin was 6.4 today. Too low! So she had a blood transfusion and IVIG. The doctors are hoping the IVIG will help to keep her hemoglobin up. They will check another blood test before we go home. My goal is to be home around midnight :) Otherwise I'll be home in the morning. As long as Brookie is taken care of either is fine. Thanks EVERYONE for the help and prayers today! Next clinic day is Thursday.

Walk for the Cure!

After a crazy week of Blood transfusions twice, Leah coming down with strep and me going back to work we decided to have some fun. Leah, Macy, Brooke and I walked the 5K Breast Cancer walk with my sister in law, my mom and others. It was a great time. Leah even ran the last mile. Macy and Brooke hung out in the stroller and took naps. That's the life. We are going to start the week over again and hope for things to go a little smoother. We all just keep smiling. God will provide!

12 weeks already

The girls were 12 weeks on Monday, so that meant......back to work. OH HELP!! Luckily my mom came to babysit and I still got to take Ashley home from preschool, so I could see the babies at noon :) It's about time I got into a routine, not to say it's easy. Monday Brooke's hemoglobin was 6.9 so we spent the day getting blood. Her next scheduled blood draw is Thursday, she will also get chemo then. Steve is going to take her. Her and daddy are big pals.

The Blogging Beginning

People keep saying I need to start a blog, so here it goes. Most of you know our story. November of 2007 we had 3 wonderful girls and thought one more would be great. April of 2008 we found out we were having twins!! Wow, what a surprise! It took some getting use to but we were very excited, especially the older girls. June 30, we had 2 amazing girls. Brooke and Macy and they made the transition to our home great. I can actually say it wasn't too much extra work. We had a fun summer. August 10 we noticed Brooke didn't look right, was pale and more yellow. We ended up in Spectrum Devos Childrens Hospital in Pediatric ICU. We almost lost our little Brookie. She had a hemoglobin of 2.2 (it's suppose to be 10 - 14). She quit breathing and had tubes and wires everywhere. By God's amazing grace we still have her. She has a type of autoimmune anemia and receives blood transfusions. She is also on chemo and other medications to keep her hemoglobin up. I'm hoping to keep people updated with the blog. (now I don't have to annoy people with my emails).