March of Dimes

SHARE HOME > SHARE YOUR STORY > ALL SHORT STORIES > BLOGS

THE DYNAMIC DUO--HANNA & RACHEL

Karri

May 2008

Category: Home

Sun

Mon

Tue

Wed

Thu

Fri

Sat

HAPPY MOTHER'S DAY

May 11, 2008 04:55pm (EST)

Happy Mother's Day to each of you!

My Mother's Day began with breakfast in bed, prepared by my kiddos, along with some help from Daddy. They delivered their presents.. each one hand made, and a perfect reflection of their four distinct personalities. Honestly, all the money in the world wouldn't buy me a present that would satisfy my heart like their hand drawn, written, and colored pictures. Poems about me, coupons for jobs to do, and "Memories of My Mom" written by Ian. I cried when I open each one.

I relaxed in bed for a few hours, yes hours. Drinking coffee, reading the paper, and watching television. I didn't prepare a single meal today, nor did I comb one hair, or brush one tooth. Daddy took care of it all.

The weather here isn't quite the type for planting, and picnicing that we typically do on this day, so shortly after lunch we headed out to Barnes and Nobles (I LOVE to hang out in bookstores) for an hour or so. The kids picked out books for helping with chores this week, and Kirk and I browsed the shelves. Totally relaxing!! Then we headed for an early dinner, and then hit Cold Stone for some ice cream before heading home.

Since getting home we've just hung out. Ian and I watched last weeks episode of Extreme Makeover Home Edition(one of his favorite memories of Me) and I'm doing some laundry, and packing.

Yep.. packing. We're leaving for Pennsylvania tomorrow afternoon. My nephew Eric is graduating from Penn State this coming Friday. We were not to leave until this coming Thursday, but on Friday things changed, and we now have to leave on Monday. Long story, that I'll just leave at... it will be better this way.

It's been a wonderfully relaxing Mother's Day!!

I wish you the very best Mother's Day.
Hugs!

Posted by Karri | Comments: (6) | Permalink

MAKING HISTORY

May 08, 2008 09:14am (EST)

Did this thought cross your mind as you "marched" across that finished line? It did mine.

On Sunday, April 27th Team Tiny Feet, along with millions of others made history by finishing the first annual March For Babies! What a proud moment!!

Our March was almost 2 weeks ago. It was a cool day, not much sun, but as one of the Neos present that day said.. the sun was shining above the clouds.

We had a great turnout! Many more people than the year before, and lots of new Family Teams. Numbers are still coming in, but I'm told we are up from last year in all areas. WAHOO!!!! One of our biggest corporate teams at our site had more than 400 registered walkers.. major growth from last year!

And I'm so happy to say that I had my first official Family Team Committee this year!!! Talk about a long time coming!! This group of ladies is so motivated, and sweet. I loved working with them, and getting to know them. We're already discussing what we want to do differently, and/or add for next year. Our tent placement was questionable, at best, so we didn't have the traffic I wanted. First order of business for next year.. Move the tent to better location!

I shamelessly stole a mission moment idea from another Share member. We passed out balloons to all the families. That was a lot of balloons. Each balloon color was representative of why we're all there. Pink and blue for prematurity, white for angels, and purple for full-term kiddos. What a visual! As I spoke on stage about the significance of the balloons and ended by stating that some day our hopes is that we'll be marching in a crowd of purple balloons. I don't think I've ever elicitated such cheers.

Team Tiny Feet did well, and grew by one more family. We raised nearly what we did last year, and had many new donors. We didn't surpass our money from last year, but we came darn close!!! My most memorable donations came from two surprising places. The first one was from Rachel's teachers Mother. A generous donation, and beautiful comment on our webpage. The next one came from the children in Ian, Hanna and Rachel's classrooms. Unbeknownst to me their teachers solicited the families for donations, and raised nearly $200 in change to make a donation from the kids. I was brought to tears by this donation. You just never know where the donations are going to come from. I've approached the school in years passed, and have been told I'm not allowed to send solicitation letters home with the students.

As we were standing around talking, and waiting for the festivities to begin we saw a little girl from Rachel's class standing close by. We walked over, said hello, and realized that they were the ambassador family the year we walked for the very first time. The girls were in the same NICU, had the same Neo, and now are in the same class at school. Small world for sure. Emily, and her family joined us, and walked a big part of the morning with us. I think I've sparked her interest in checking out the Family Team Committee, and joining us.

My one disappointment this year is that I forgot my camera, and therefore have not one photo of the day!! ARGH!!! I don't know how I managed this oversight. I don't often travel without my camera, and never go to an MOD event without it. I'm going to check with the MOD staff. I know I saw the photographer snapping some photos of the kiddos from our team on several occasions so hopefully I can get copies of them.

That's our MfBs in a nutshell. It was a great event, with amazing people!! Until next year......

Posted by Karri | Comments: (11) | Permalink

WORDS NEVER CONVEY

May 01, 2008 08:46am (EST)

I was going to blog about March for Babies, but I want to dedicate this blog to my friends here at Share.

Those of you who have followed our journey, and supported me through this journey "Thank You" is not enough.

Your words of encouragement, support, validation, and true understanding are making this journey a little more bearable. We're all on this path, finding our way, and trying to do what is best for our children. It's a path that is unfamiliar, and sometimes dark for each of us, but when walking together we are able to find the light through the trees, and somehow find our way.

Our NICU days, and early years at home were dark. Many of my feelings were unresolved, and pushed aside. I wonder now how I ever managed that time in my life. I wonder what those around me saw. I didn't have Share. I didn't have anything that looked like Share. I was simply surviving, and moving through my days.

Then Share came along, and I found a voice I didn't know I had. I found a mission I knew I had to support. Through supporting that mission I've found that I had my own feelings to resolve, and Share, and many, many of you have helped me to do that.

Since October I've been wondering what my role is here. What my purpose is. In my almost 4 years as a member I have found tremendous healing, and through my healing I hope I've been able to help others. Hanna and Rachel are an inspiration to other families just beginning this journey.

Then suddenly I was not so sure our story would bring hope. I was worried that it would bring worry for others. I began pulling away. Not sharing, not posting. I was always reading, and following blogs, but I wasn't sure our story had a purpose.

Rachel was exhibiting new symptoms. Some of which I didn't recognize. Many that were described as a "possibility" while we were in the NICU. A possibility I hid somewhere deep in my brain so I could go on with living and enjoying my babies. So that I didn't become consumed by this fear (oh how easily that could have happened), and in turn hold my girls back from living.

From the beginning of becoming a member and sharing our story, I've heard what an inspiration my girls are. I don't disagree with that.. they are. I know that, and deeply believe that. I'm not angry at those that have said that.. not at all. I'm glad they can bring hope to a family. That has always been my biggest purpose. But suddenly I was afraid I would take that hope away. That inspiration away if I were to share all that was happening with Rachel. She's 7 years old, she should be "cured" of her prematurity. Right? We all want to believe that, but the great reality is none of us know for sure when the results of our babies prematurity could surface.

We all hope for a "Hanna". No challenges, no delays, no struggles. She does seem to be "cured" of her prematurity. She suffered, for four years, but now all seems to be great with her health, and developmentally she's right on target. She's what we dare to dream about while sitting in that NICU. She is what I wish for every single parent facing prematurity and Thank God daily for allowing her and her sister to be in my life.

I've slowly begun sharing again. Blogging about our journey. For selfish reasons really. I needed to write. I needed a space to share my feelings.. all of them, and not feel judged, or pacified. I needed support from others who truly understand how this feels to be the mother sitting on the other side of that table when the doctor tells you your child has epilepsy (or any other diagnosis).

You all have embraced me. You have said "I'm sorry", and hugged me. Not unlike all my friends who live close to me. But the difference is you can also understand what it means to hear a diagnosis. You can understand why I feel anger, guilt, and sadness. Because you have had same feelings.

Those Thank you doesn't convey the gratitude in my heart.. I do say:
Thank you to each one of you. You have showed me I do need Share, and that I do have a place here. Even if for now, it's so I can fill up my own heart for awhile before I go about filling others.

Posted by Karri | Comments: (11) | Permalink

EPILEPSY

Apr 29, 2008 01:12pm (EST)

I never imagined I'd be the mom of a child with a life long condition. Of course I never imagined I'd be the mom of twins, or twins born 15 weeks prematurely for that matter so what do I know.

Life lesson #456,382: Never expect life to go a certain way because it's certain to go the exact opposite just when you think you have a handle on it.

Friday we had our follow up with Rachel's neurologist. The appointment went just as I had prepared myself for it to go, but had spent the entire week praying it wouldn't. Even then I wasn't prepared enough.

Diagnosis: Epilepsy - Partial-Complex Seizures
Treatment: Twice Daily Medication
Length of treatment: Lifetime

Statistically speaking kiddos with "similar" brain injury, "similar" injury location don't typically come off medication. He said he never says never, but from his experience these kiddos that begin seizures as a result of a bleed aren't typically able to come off meds. Not that all kiddos with bleeds have seizures, but that the ones that do remain medicated throughout their lifetime.

We will do our best to keep Rach seizure free, and if that happens then we'll try to ween her down off the medication, but it's highly unlikely that if we do that she won't begin to have seizures.

She started the medicine Friday night and seems to be doing very well on it. We haven't seen any side effects at all at this point. YAY!!! She will stay on the current dose for one week, then we will double the dose, and maintain that dose unless she continues to seize. If that happens we increase again. Lots of trial and error, and wait and see. Our goal is to keep her completely seizure free.

We explained to Rachel that her EEGs were to determine what kinds of pictures her brain draws. That everyones' brain draws pictures, but that the doctors think sometimes her brain draws pictures to quickly, and that when that happens it's called a seizure. So we explained that her medicine will help to make sure her brain draws the pictures slowly so she doesn't have seizures. It satisfied her questions, and Hanna's and Will's for that matter. Ian, for obvious reasons understands a bit more, and so we have explained things a bit differently for him, but basically with the same information. They each seem comfortable with this explanation so for now we're going with it.

Emotionally I'm coping. This has been a long time coming, but really the answer I knew months ago. Maybe the slow blow has made it easier to handle a little. Nonetheless, it's still hard to face when we had gotten so comfortable.

I wish that this would never have become a reality.. not for me, but for Rachel. This will be her life. This will be her reality. Yes, she will learn to life with it, and take care of herself, learn her limitations maybe. I just wish she didn't have to live with this, or learn any limitations.

I guess you could say I'm angry, and I think I need to be right now. It's not fair... it's not fair for my little girl.

I'll get through this, we'll all get through this. It's just going to take some time. It will become our new normal. I was pretty sure I was finished with new normals about 7 years ago though. Guess I was wrong.

Thank You to each of you for your support through out this journey. You're posts, emails, texts, and calls all help as we walk this new path we're on.

I hope everyone had a great March! I will share our day in my next blog!

Posted by Karri | Comments: (12) | Permalink

HERE COMES THE SUN

Apr 22, 2008 08:41am (EST)

Can you hear the music in your own mind as you read that title?

I've been waiting, and searching for my rainbow to come along. Really it's been right under my nose, I just couldn't see it through all the fog of emotion I've been under.

Two weeks ago Hanna brought home a poem that she was to practice reading aloud to improve fluency, and expression. She would be reading this poem to her class, and to the parents. We would be invited in for this presentation. We practiced everyday, sometimes several times a day.

Hanna is not at all like Rachel. She's shy, and much more reserved, much like her Daddy. Her teacher and I had to institute an incentive plan to get her to begin participating in class back in the fall. She just doesn't like all eyes on her. The incentive plan worked wonders, and she has come out of her shell in class, raising her hand regularly. Knowing that she was comfortable in class I was confident she could do the reading.... to her classmates. I wasn't so sure how she would do with all the parents, and siblings in the room.

Last Friday morning we all gathered in the class for the first annual First Grade Poetry Reading. Each kiddo was selected randomly to read their poem. Hanna's name was drawn, and up she went. No hesitation, no stuttering. She stood up there, big smile on her face, and read her poem with fluency, expression, and with a loud enough voice to be heard even in the back of the room. I was so proud.. I cried.

It's been an emotional journey I've been on, and Hanna reading that poem was the rainbow I needed. To see her standing there, big smile on her face, proud of herself, and knowing in my heart just how far she'd come. Seven years ago I didn't dare to dream of her reading a poem to a room full of people; for my heart may be broken again. But last Friday she did just that. She was a typical little girl in first grade learning to read, and making friends. Such a simple dream, but the best one in my mind.

Below is her poem:

Take Me Out of the Bathtub!
(to the tune of "Take Me Out to the Ballgame")

Take me out of the bathtub
Take me out of the suds
I've been here soaking since half past two
I feel so sudsy, and wrinkle-y, too
Oh, I washed all over my body
My head, my toes, in between
I used one, two, three bars of soap
Take me out... I'm clean!

Take me out of the bathtub
I'm stuck here with my toys
Dump trucks, and squirters I think are great
But I better take off my ro-o-ller skates
'Cause each time I get up I wobble
I hold on, but it's a pain
I tried once, twice, three times to stand
Better get a crane!

___________________________________________________

Team Tiny Feet

On Saturday afternoon we hosted our annual Team Tiny Feet Kickoff to celebrate Hanna and Rachel, and the support of our team members. I do a small presentation, pass out the gift to our team's top fundraiser from the previous year, and share the girls' video for the current year. It's our Thank You to all our friends for their support in a mission that's easy for us to be passionate about.

Most of the members of our team have been with us since the girls' arrival, or shortly after their homecoming. They've lived this journey with us, and have watched Hanna and Rachel grow, and thrive.

Our fundraising is going well, but we're all trying to make a big push in this last week before marching on Sunday morning!

Despite our recent struggles we are still very blessed to have 4 amazing children, each with their own story, and wonderful friends who support us!

IMG_0806

IMG_0807

IMG_0810

IMG_0801

Posted by Karri | Comments: (14) | Permalink

RAINBOWS

Apr 16, 2008 08:54am (EST)

A wise friend recently mentioned that in order to get rainbows we have to get through the rain first. I whole-heartedly believe this, and we've certainly had our share of rainbows. But recently I feel like I've been carrying my umbrella for far too long. I would like the rainbow now please. It's been a long couple of months.

It was GREAT to go to San Diego as a family, visit with Donna, and her family, and be away from it all (as much as possible). I can't begin to put into words what Donna's friendship means to me. She doesn't have to say a word to make me feel better. Just her presence through all of this is all I need. Knowing that if I call she answers, if I text she replies. If I cry she hugs, and if I laugh she laughs with me. She has the ability to understand how very painful this journey is 7 years later. Like an old wound being ripped open. Yesterday when I called her she said "I don't know what to say." My reply "You don't have to say anything. You did all I needed you to do. You answered the phone."

I've tried, and continue to try to be strong. Put on that happy face, and be brave. Rachel reads my cues, and she needs that from me for her to be brave. Although I often wonder if she's the one making me brave.

Rachel's seizures are not getting any better. As a matter of fact things are progressing, at times it seems quite rapidly. We are seeing new symptoms, and increased frequency.

We met with a top rated Neurologist from Children's in Chicago last week. His opinion is that she's having a more severe type of seizure (Complex Partial Seizures), and that they will progress without medication. NOT at all what we were hoping to hear from this "second opinion". Now I know you could line up 12 different doctors, and they'd all have their own opinion. I was expecting him to tell us that we could hold off on medication, and continue to watch, or at least agree with the first neurologist, that we should medicate now. I was NOT expecting his opinion to be so strikingly different, with a more serious nature. Denial; once again a beautiful thing!

Kirk and I really like this doctor. He exudes such a confidence about him. His knowledge of epilepsy is very impressive. He asked many more questions, and many different questions about symptoms, and things surrounding her seizures. He had a very clear reason for his opinion based on what we were describing, as well as her history, etc.

The results of her 24 hour EEG (ordered by her original neurologist) in March were completely normal. What? How does that happen? How do we get two abnormal, and then one that comes out completely normal. Unfortunately, it simply means we didn't catch anything during those 24 hours. This information was completely frustrating. We understood it, but it was still frustrating. We were praying that this would give us answers. Not only did it not give us answers, it brought more questions.

Kirk and I decided our best option was to seek a second opinion. That brings us to where we are today. The new neurologist, Dr. C ordered a 48 hour ambulatory, video EEG. Now this makes much more sense. We have Rachel in her own surroundings, her own routine, and her typical daily stressors. She was hooked up on Monday evening, and will be disconnected this evening. It's been a rather large undertaking for all those involved, including the school, but it's going well.

In true Rachel fashion she's taken this all in stride. Her incredible spirit is shining right through. She only fretted a bit, but with reassurance from Kirk, and I, and her teachers at school she's done very well. We went in early yesterday, got her set up, and then I stayed a bit longer to talk with her classmates about what Rachel has on her head, what all the equipment is, and what it's all for. They had some great questions, and were very sweet. They were mostly concerned about wether Rachel was hurt, or was hurting. And just like all kiddos, once we answered their questions they were satisfied. Mrs. Kelly said the day went very well.

Bedtime has been a struggle, so we'll all be happy for the disconnect before bed tonight. Rachel likes her bedtime routine of her snack, books, and some snuggles, which we can accommodate. It's all that follows. It's the night light (required for adequate lighting for the camera), the glowing blue screen in her face from the video camera, and the lack of blankets (doctor's orders) which prevents her from snuggling into the cocoon, face buried, that she likes to sleep in. These things we can't control. Not to mention the lumpy mess of wires, and gauze wrapped around her head. All this has made going to sleep difficult. Along with her struggles, then Kirk and I lay awake all night keeping her on the video screen as much as possible. When she rolls, we have to move the camera. UGH.. not fun. But hey.. we can do anything for two days, right?

I don't like this constant state of worry, and anxiety I feel I'm in right now. The constant "what ifs?". How did I get through the NICU? We had many more questions then, than we do now.

I think I can rationalize this, but it's so hard to connect my heart and my brain. When we were first in the NICU, and leading up to discharge I would tell myself. If we can just get home, then we'll be fine. Life will become "normal". As you all know that doesn't really happen, at least not at discharge. You don't ever really get that normal you once had. You get a "new normal." Okay, fine. Subconsciously, I think I was telling myself that the farther away from the NICU we got the better chance that issues wouldn't come up. Makes sense, Right? Of course.

What has thrown me for a loop are two things. First off, we knew starting at about age 3-4 Rachel was going to have learning issues, we just didn't know when, or to what extent. Learning issues, while sad for a mother to hear, are not in any way dangerous. Life impacting yes, but not life threatening. But epilepsy... NEVER SAW IT COMING!!! NEVER, NEVER, NEVER.
Not only are we being faced with a new diagnosis 7 YEARS later, but a diagnosis that can be dangerous. And this diagnosis is a direct result of her prematurity. I can't protect her. I can't take this away. I can't make it right.

I'm also struggling with feeling this constant anxiety over not being able to control it, to fix it, to make it right. I do NOT like feeling this way. The anxiety is not me. It's not who I am. I want my rainbows.

IMG_0789

IMG_0790

IMG_0792

Posted by Karri | Comments: (17) | Permalink

LOST IN A DARK HOLE

Mar 12, 2008 11:07am (EST)

I've not been here at Share for, well a long time. I have stopped in, read some posts, wrote a few posts in response to some that caught my heart. Offered words of comfort, or advice that I hoped dearly would help. I've done a lot of reading, and "lurking" as the techy people like to call it, but I've not been actively posting, and participating on Share. I've been on empty.

I've been in a dark place for some time. I have been talking about these emotions, and I don't think they are all new, but I think the catalyst for them is. From the moment I heard Rachel's neurologist change her diagnosis from "possible" seizure disorder, to in fact a seizure disorder 7 years of emotions came rushing to the forefront of my mind, heart, and soul. 7 years of emotions I couldn't cope with. I began shutting myself off to those around me. Not completely, but I was only doing what I *had* to in order to get through the day. Thankfully I have 4 amazing children that need me, and need me to get out of bed each day to take care of them. I also have incredible friends who wouldn't let me fall completely into that black hole. They have been calling, encouraging, and keeping me busy, even if they don't realize it.

I have this fear of letting someone down. I constantly hear comments such as "I don't know how you do it" or "You have your hands full". I could really live with never hearing either of those things again. Don't get me wrong I love, and appreciate each of my children more than life itself, but for heaven sakes.. What if I just don't want to do it? Just for today? What if I didn't? What would happen? I'm too afraid to find out. So I do "it". I also do "it" for many other people. Not unlike many of you. I can't even keep track of all the hats I wear in a day, but I don't have time to stop and count. I have to keep doing "it" or I'll let someone down. Right? I have to be strong. I have to put on my smile, and keep going. I have to.

I know I don't, but I do. Does that make sense at all?

It's been a miserable 6 weeks. Our house has been hit continually with one thing after another that hasn't helped with the emotions I've been struggling with. Sometimes it feels like it's me against God, and right now he's winning. I know this isn't true. I know he's with me each step of the way, but sometimes I wish he'd be all finished "teaching" me "something". I think I've learned enough for now... not forever, but for now.

On top of all the emotional baggage I've been dealing with, our house has been sick. It started back on Feb 18th. Sadly I can track the entire month because we've done nothing but go to one doctor or another. Fill one prescription after another.

It started with Kirk. He came home from work early that day burning up. He spent the next 6+ days in bed. He never gets sick, and he was really sick. Friday he did go to the docs, determined it was the flu, and had to finish running it's course. Because he was sick we had to postpone Hanna and Rachel's birthday party. We certainly didn't want 8 little girls coming down with this. It was scheduled for the following weekend.

We did get to go to American Girl for dinner and doll shopping on the 24th, their actual birthday as a family. Kirk still wasn't feeling great, but he put on his smile, and we got through the evening. By the end of dinner Will was not looking good, and was not acting himself.

Monday morning Will was sick. Fever, etc. By Tuesday night I was sick too. Will and I spent the next 7 days in bed treating our symptoms, sleeping, and feeling downright miserable. Again, we had to postpone the girls party. These poor girls! To this day we've not had their party with their friends. We still aren't healthy.

We headed into week 3. By Monday Will was much better. I still was'nt great, but I forced myself to get up, and go about my day.
By Tuesday night Rachel had the fever. I immediately called the Peds office Wednesday morning, and we got a script for Tamiflu for her. She did bounce back faster than anyone at this point, and went back to school Friday. Tamiflu is worth every penny of it's $76!

I woke Thursday morning in excrutiating pain. The left side of my face was throbbing, my teeth hurt, and I couldn't breath out of my nose. The fever was back by midday.
Friday morning I was off to the doctors. One sinus infection, double ear infection, and three prescriptions later I was out the door.

I couldn't believe this was happening. Oh, but it didn't end.

Saturday night I was lying in bed, and Kirk came to check on me only to ask "what is wrong with your face?" Nice. I was fire engine red, and covered in hives from my head to my thighs. My body has apparently decided it's allergic to Augmentin. No more Penicillin drugs for me. After some insurance troubles Kirk finally got home from the pharmacy with a new antibiotic, and Benadryl.

That brings us to this week.

Sunday night we took Ian, Will, and Hanna to my girlfriend Carol's to spend the night. Rachel was being admitted into the hospital for her 24 hour Video EEG. This date has been looming since Feb 4th. This is so hard to articulate what this means, and how this makes me feel.

Kirk and I took her Monday morning. Kirk spent the day with us, and then left for home to get the other three when school was out. I stayed with Rach. She was such a trooper. Getting hooked up was a bit difficult, but not too bad. Then we spent the next 24 hours playing games, coloring, painting, doing some school work, watching movies, and visiting with old friends from the NICU. The disconnect, and getting the leads off her head was horrible. She hated every single second of it. Her sensory issues aren't horrible, but her most sensitive spot is her head. She cried the entire 30 mins it took to get all the tape, and wires off her head. It was torture for her. I felt so helpless. I talked to her, and held her hands (more holding them down than comforting her I think) but there wasn't much more I could do.

Now we wait. Two weeks for results. We have a follow-up scheduled for the 24th to go over the results. Again, I try not to be consumed by this while we wait, but it's so hard. I constantly think back to 7 years ago. What could I have done differently? I struggled with guilt for a long time, and then felt like I was over that. Lately, not so much. We know that preemies, especially those with significant bleeds can "grow" into seizures. Hard to ignore that if she had 40 weeks she'd not have this problem.

And yet the sickness continues. When I called Kirk yesterday morning to check in, and talk to Ian and Hanna before school Kirk informs me that Ian is sick. He was up in the middle of the night with a fever, and sore throat. Not 20 mins after we hung up Kirk called me back to tell me Ian had just vomited, and Will had a fever, and sore throat too. Unbelievable!!!

So as of this morning Ian and Will are both positive for Strep Throat, and on antibiotics. They have both been given referrals to the ENT. Ian has had strep 5 times since September(8 times since late 2005), and his tonsils are large, and interfering with his airway. Will's tonsils are just as large, and causing snoring.

It's just all been too much. Too much. A girlfriend called this morning to see how things were going. To see how I was holding up. She knows all that has been going on. Honestly, I don't know. But I have to get up each day, and do what I do. I don't have any other choice. It's my job.

Kirk has been great, but he can't stay home and hold my hand. He has to go to work. He can't do my job, and his. Life just doesn't work that way.

I'm so thankful for this space. This blog. I can write this all down, and get it off my chest.. even if it's confusing, and makes no sense. In the end I do find some comfort in it.
Thank you for Share.

Posted by Karri | Comments: (16) | Permalink

HAYDEN MICHELLE

Feb 23, 2008 07:38pm (EST)

This is the most difficult blogs I'll ever write.

Yesterday afternoon at 2:50pm our family was blessed for far to short a time with the tiniest of Angels. Hayden Michelle arrived at just 15 weeks gestation. Perfect in every way, just to tiny to survive. Though she was only here for the briefest of moments she will leave an ache in our hearts that we have faith will some day heal, but an imprint that will last forever.

Her Mommy is my niece Erica, her Daddy is Paul. She has two wonderful big brothers PJ (5 yrs) and Braeden(3yrs) who will never have the chance to know her.

She will forever be loved by Grammy and Pappy, Great-Grandparents, Aunties, Uncles, Great Aunts, and Great Uncles, and many, many cousins. We find peace and comfort in knowing that she is with those in our family who have gone before her.

On Thursday night Erica's water ruptured, and she began contracting. She went to the ER immediately, where she was then admitted. The odds were certainly not in her favor. The contractions stopped, but her temperature began to rise. Antibiotics were started, and we waited. We prayed for a miracle. On the ultrasound monitor the flash of Hayden's heart beat on. She wanted to be here, she wanted to live.

By yesterday morning Erica's temperature was continuing to rise despite the IV antibiotics. Still Hayden's heart beat on. Her doctors explained that Erica's life was now in jeopardy. All the statistics were given. It was the doctors advice to begin pitocin, and induce labor. Erica was tormented, as all Mothers would be.

We spoke for a time on the phone. I tried my best to comfort her, to answer her questions, and explain that I too was hurting along with her. That she had to make a choice that no mother should ever have to make. I explained that she had done nothing wrong, and could have done nothing differently. But I also told her she had two little boys here that needed her now, and that Hayden knew how very loved, and wanted she was. Hayden knew her Mommy, and Daddy loved her.
We talked about naming her, holding her, and taking pictures.

Today our family is trying to make sense of where we are. How our lives could be touched by prematurity once again. But this time we mourn the harshes reality of it. How I wish I could take away her pain. That some how Erica and Paul could be spared this heartache that will encompass their lives for far too long.

I am here tonight asking for prayers. Prayers that Hayden is at peace. Prayers that Erica and Paul find comfort in one another, and in those around them. Prayers for our entire family.

Hayden Michelle
.75oz
6.25 inches
Feb 22, 2008
Feb 22, 2008
Our Precious Angel

Posted by Karri | Comments: (11) | Permalink

A NEW JOURNEY BEGINS

Feb 05, 2008 04:11pm (EST)

As I turned right off Dempster, headed towards the back parking lot of the Children's Hospital, a heap of memories came rushing back. The irony that yesterday, the 7 year anniversary of my arrival by ambulance, 23 weeks pregnant, membranes ruptured, is the very hospital that I was now arriving at for another visit to Rachel's neurologist. Reason being..... that membrane rupture that started this entire journey.

The passed two days have stirred emotions I struggle to put into words. The emotions just under the surface, that erupted at the end of her appointment causing me to silently cry the entire 45 minute drive home. All the while Rachel sat in the back seat happily chattering away, not a care in the world. How thankful I am that she has very little understanding of all of this... for now.

When I went to bed Sunday night after an evening spent with friends watching the Superbowl I asked Kirk if he knew the date. His reply was no. I reminded him that Monday, February 4th was the day I was admitted to LGH. In previous years the thought of this day would cause anxiety. Anxiety that has lessened with each passing year, but still the quickening of my heart, the knot in my stomach. The thoughts of "what could I have changed?". This year was different. As I closed my eyes to go to sleep I thought back to where we started, and how far we've come. How Hanna and Rachel have overcome, and grown, both literally, and figuratively. I was at peace with the journey we've been on.

Then Monday came.

1:30pm I found myself sitting in the very hospital I sat in 7 years ago listening to yet another doctor talk to me about medications, statitics, and more unknown that I've listened to in a long time.

And so our new journey begins. We've beaten Prematurity. We've overcome some of the highest mountains that come with it, or so I thought. Yesterday we sat staring at a new one. One that will likely never go away. Will require medication to control, and can have lasting affects, and require constant monitoring.

Rachel's Neurologist is certain that the episodes we described to her are seizures. They are called Focal Seizures, happening in one origin of her brain, the frontal lobe. Based on our clinical description, her abnormal MRI, abnormal EEG done in November, and the EEG done in June 2001 that was also abnormal the evidence is pretty conclusive.

She has given us the names of some medications for which she'll be placed on one of them. Like all medications the side effects are worrisome to say the least, but of course the alternative is even more scary. Decisions to come.

The hard questions that followed the diagnosis came with very little answers. Can these seizures progress in frequency, and severity? Yes they can. Will they for sure? We have no way of knowing. When can this happen? We have no way of knowing.

She's been described as a snowball at the top of a hill. We simply have no way of knowing how steep that hill is, or how quickly her decent could be.

Once again, wait and see. I HATE those words!!!

We are awaiting a call from the hospital to schedule an inpatient 24 hour video EEG. Kirk and I need to have a full picture of her brain activity, and the doctor agrees. We need to know how frequently these are happening, and a 1 hour EEG just doesn't give us a big enough picture.

At this point I have no idea what I'm praying for. Guidance and strength I suppose. Guidance to know the right decisions, and strength to carry us all through this.

I love my beautiful girl.

Posted by Karri | Comments: (10) | Permalink

GULP!

Jan 23, 2008 10:41am (EST)

I just completed the prelimanary paperwork for Will's Kindergarten Registration. Oh Dear! How can this be??

And to add insult to injury they have instituted full day Kindergarten in our district... beginning next fall.! Now, I'm an advocate for this, though I know we all have our own thoughts on the subject. Most kiddos are doing some sort of preschool either beginning at age 3 or 4 years. Will is in this population of kiddos who have been in preschool for 2 years now, and is completely ready for this change. He's beyond all academic expectations, and socially, again absolutely no worries there. If you looked up 4th kid.. you'd find a big ol' picture of Will! Add to that he's independent, his self help skills are excellent, and he seperates from Mommy with no trouble at all. His teacher has dubbed him the "leader" in the class, despite the fact that is the the absolute youngest in the class with his 5th birthday coming more than 3 months after any other child in his class this year.

So the point.. Will's ready... Mommy's NOT! Not only is he going to be gone five days a week it's going to be ALL DAY.. 9:05-3:35. No more lunch dates... no more lazy mornings at home doing puzzles, or playing games. YIKERS.. I'm going to be lonely!

In March there are having an information session for Parents what the full day program will look like in comparison to the half day program. I'm very anxious for this meeting! I want to know how this full day will benefit Will and his peers.. not just next year, but long term. I've done research.. and have found both good, and "not so good" impacts of all day K.

Kirk's question to all of this....
"So Mommy what are you going to be when you grow up in September?"

Mommy's Answer....
"I don't plan to grow up for at least a month or two. First I'm going to cry like a baby. I may even throw myself on the ground(only after Will has walked away)."

I still can't believe I will have no one home with me all day come August 25th!!!! AHHHHHHH

Posted by Karri | Comments: (5) | Permalink

Archives