So, an update to the "Waiting" blog... MITCHELL GOT THE JOB! Yippee! It's been a long time coming, but it's good to be back where he started, and where our extended family of brothers and sisters are...Timberlake your are included in this don't worry! However, Mitchell put in 5 years volunteering with KCFR and hundreds of training hours so it feels really good to get back to those 'roots.' He starts May 1st and I am so excited for him to be in town again and back to a somewhat normal firefigher schedule (he used to work 48 on, 96 off- ick!)
Also, here at the winery we have had some big changes. The last couple of weeks have been pretty difficult and heartbreaking- laying off employees and having another quit- it's hard no matter what the situation to see someone you spent so much time with go. The lay-offs came due to us closing Barrel Room No.6 as a wine bar, however we are keeping the building and promoting it as a Private Events Facility which is booking up fast!! (Call me if you need a place to party!! wink wink) So, essentially, Kimber and I are the only ones running everything. Luckily we have Meghann also who works part-time and is a huge asset and is our glue sticking us and everything together. So, I no longer am strapped to my desk doing accounting and HR, I am now the events director and administrator...basically everyting but accounting and HR :) It's a lot of fun, and if you know me, you know I like to throw a party or a gathering of some sort, so it's a good fit. This first week I have 4 events and it's just getting busier! I do wish however that 'upper management' would have taken more responsibility in a few things (ie-guiding employees and keeping things very vague) but I guess that comes with any management...but I still have a job, so I have to be the best I can be.
If you haven't stopped by to see Debs lately, please do. She is slowly becoming more and more immobile and tired making it difficult to do....well anything really. I think she really needs some boosting and some optomism right now. She is essentially living groundhogs day (same s**t different day) sitting in the same chair, watching TV as she can't do anything else. Sitting in her chair is actually starting to become difficult- she can no longer lift her head, so it is supported by her hand which as of last night is losing its strength as well. If you don't know, Debs has lost mostly all movent to where all of her actions and movements are assisted. She is lifted from chair to chair and 'shuffled' because she can no longer walk or even stand on her own. The ALS is starting to really progress through out her limbs making her more and more imoblile, but luckily a few of us are strong enough to lift her from place to place. Her breathing is outstanding though, which is really good news and she is of sound mind just like always. We also just got her eye-max back. The eye-max is a device that reads her retinas!! It's pretty crazy, but it follows her eyes and when she blinks it selects and speaks whatever it is she has typed with her eyes! It is pretty neat!
So, as hard as it is living day-to-day with the in-laws and caring for Debs in the evening and through the night, I still feel very lucky and fortunate. I am lucky enought to be in good enough health and sane mind that I can take care of Debs, and do it compassionately. I have a good job that I enjoy, I am able to seek a higher education and pay for it, I have a roof over my head and food in the cupboards, I have a HUGE and FANTASTIC family that I love spending time with-each and every one of ya! My friends are amazing and right there waiting for you whenever you need them for a beer, a good talk, or to lift you up off the pavement when the two have combined a little too much...and there when you never thought you would need them when you aren't really sure you can go on. And my husband, my God my husband. What a blessing he is. I never thought I could ever love him so much, and just when I've reached that level, I love him even more-and he loves me right back :). After nearly 9 years together, I still can't get enough of him... I still get giddy when he calls me and my heart skips a beat when he gives me a smooch...even on the forehead! I am lucky enough to know the blessing of being pregnant and being a mother, even if my babies are angels. Hopefully I will know it again soon...
I am SO lucky.
Wednesday, April 22, 2009
Monday, March 30, 2009
Sitting, Waiting, Wishing...
These days all seem to be filled with a lot of sitting, waiting and wishing. Mitchell is up for a new job at KCFR that we have been waiting forever to open and everything is lined out pretty good, but we don't get an answer until the 13th. I have always wanted him to be at KCFR - this is where he trained and put in 5 years as a volunteer...and not to mention the majority of our friends (family!) work at KCFR, so it's just a natural fit. I miss KCFR and all the guys..and gals! My job seems to keep developing every week, but still I sit here waiting and wishing for 'what's to come.' A bunch of changes happening at the Winery, for the best mind you, but I feel like I am always on the edge of my seat ready to jump at the next challenge. Also, I'm eagerly awaiting the Nursing program at NIC- I cannot wait to be a nurse! But, it will be at LEAST 9 months before I even get to apply and another 6 after that to see if I am accepted....then 2 more years of school.
I am involved with the Idaho Panhandle Kiwanis Club as well, sitting as a Board Member and also the Chair of our newest and biggest event - A Taste of the Coeur d'Alenes. I am so excited for this event, it is huge and is going to be amazing! I look forward to this weekend every year, walking through the entire park looking at all the great Art while stuffing my face with Italian Sausages and Berry Ka-Bobs, and now I am helping put it on!!! I'm stoked- but again...sitting, waiting and wishing! Lots of prep work has been going into this, so I hope the final reward of a great event and also some even better fundraising for our community and children globally.
Oh, AND.... we are trying to get pregnant again. As terrified as I am to be pregnant again, I can't wait. For the last well..6 months really..we have been 'trying' (as in not preventing it) but yet...i keep waiting for that + sign on the stick... but nothing. I guess living with your in-laws puts a little damper on the whole thing also...but I am being so impatient. The first time we got pregnant was like a week after we said, "ya, lets try!" so six months feels like forever. But I know when my body and mind is ready, it will happen. I'm sure all the emotional, physical and mental stress I've had the past six months doesn't always let your body do what you think your mind and heart wants. I'll keep you posted... and we'll keep practicing!
I am involved with the Idaho Panhandle Kiwanis Club as well, sitting as a Board Member and also the Chair of our newest and biggest event - A Taste of the Coeur d'Alenes. I am so excited for this event, it is huge and is going to be amazing! I look forward to this weekend every year, walking through the entire park looking at all the great Art while stuffing my face with Italian Sausages and Berry Ka-Bobs, and now I am helping put it on!!! I'm stoked- but again...sitting, waiting and wishing! Lots of prep work has been going into this, so I hope the final reward of a great event and also some even better fundraising for our community and children globally.
Oh, AND.... we are trying to get pregnant again. As terrified as I am to be pregnant again, I can't wait. For the last well..6 months really..we have been 'trying' (as in not preventing it) but yet...i keep waiting for that + sign on the stick... but nothing. I guess living with your in-laws puts a little damper on the whole thing also...but I am being so impatient. The first time we got pregnant was like a week after we said, "ya, lets try!" so six months feels like forever. But I know when my body and mind is ready, it will happen. I'm sure all the emotional, physical and mental stress I've had the past six months doesn't always let your body do what you think your mind and heart wants. I'll keep you posted... and we'll keep practicing!
Thursday, March 26, 2009
Fetal Demise Interview
A week or two ago I was contacted by a nursing student at WSU doing a research paper on fetal demise. She was looking to gather information about different experiences so she, and other nursing students, would know what and what not to do. She was very sweet, and I can tell she will do great things as being a nurse. She truly cares, and I think we can all agree that the world needs more people in the medical field that care the way she does.
I have sat on two parent panels and am doing another one on the 31st. A parent panel is like a question and answer board that sits in on a training for nurses and physicians so they may have a better understanding of your experiance and what can be done differently in the future. Because of a panel I did at a nurses training, KMC has changed their policy on how they handle infants/babies who have passed. When Mitchell and I arrived at the funeral home, we were shocked to see our beautiful Aiden wrapped in a chuck (essentially a medical paper towel) while Wyatt lay next to him bundled in a onsie and two blankets. KMC now ensures me their practice is to bundle the baby with a blanket, and even clothed if possible, when being transported through the hospital, lab and funeral home. Aiden did have a blanket, however they thought it would be better to give the blanket to us than robe his little naked body with it. Anyways...I'm doing what I can to help the next parent that has to live their worst nightmare. And this is a start...
Here is the interview: (its a long one!)
Where did you receive maternal care?
My prenatal care was with the Henneberg office in Coeur d’Alene and I delivered Aiden, Twin A, at Kootenai Medical Center, and Wyatt, Twin B, at Sacred Heart in Spokane, WA.
Can you walk us through the experience? What do you remember about your feelings surrounding this experience?
I am 25 and married to my high school sweetheart of almost 9 years. We have been married for 2, and last spring decided we were ready to experience the blessing of having children. We got pregnant right away and just a few short weeks later, discovered we were having twins, and eventually found out the sex – boys! We were elated, to say the least. I had a perfect pregnancy, read every book, ate all the right things, did everything I possibly could and everything went great, until it didn’t.
Through all my reading and research about pregnancy I was relieved to find myself five months pregnant with no signs of premature labor, miscarriage, etc and had read after 16 weeks, you are basically ‘in the clear.’ At 22 ½ weeks I had a couple days of intense pressure and cramping which my doctor explained was just round ligament pain and my uterus stretching. The cramping didn’t go away and I woke at 2:20am to a terrible cramp and my water breaking.
Apparently, they weren’t cramps, they were contractions. By the time I made it to KMC, I was fully dilated and delivery of Aiden was eminent. Aiden’s labor was intense because it was so sudden and then prolonged. There was no hurry to deliver him as Wyatt’s membrane was still in tacked, and rushing Aiden may have compromised Wyatt- there was a glimmer of hope for him. Aiden was alive and well when we arrived at the hospital, but was stillborn at 9:19am Monday, August 26th, bruised and banged up due to the hard labor. Immediately after delivering my Angel Aiden, the decision of going to Sacred Heart was our next focus to try and save Wyatt. We waited to MedStar to arrive to transport me and only spent a very quick and harsh couple of hours with Aiden before I was transported.
Upon being admitted to Sacred Heart, I was bombarded with questions, tests and prayers – lots of prayers. Wyatt was still hanging in there, fighting hard like always. His membrane had not ruptured and my contractions we fading. We kept monitors on him at all times and came to the decision of an amniocentesis to check for chromosomal abnormalities and infection to help rule out possibilities of why this was happening. If there were no abnormalities or infection they would perform a cerclage to give Wyatt a couple more days, or weeks, for the best chance of survival. Sacred Heart would not perform life saving measures on any baby younger than 24 weeks, 23 weeks if the parents insist. We had previously decided with doctors that we didn’t want Wyatt’s life to be spent hooked up to monitors and tubes, but rather in our loving arms without struggle or pain, if he were delivered before 26 weeks. The mortality rate of infants born at 23 weeks is 80%, 24 weeks, 70%, and 26 weeks, 50% (or something around there) and we just couldn’t see ourselves making our son fight that hard for his life…or what little of it he had.
The amnio sent me into intense contractions and excruciating pain. After 34+ hours and a couple days at home of cramping all without any pain medication, I could not handle any more. I was given something to ease the pain, but it wasn’t enough. I wanted to be numb. The docs ordered an epidural and while the epidural was being performed, my water broke. I delivered Wyatt five minutes later at 5:24pm on Tuesday, August 27th.
We were absolutely heart broken. I had never felt pain like that, and by pain I mean emotional, not physically. Giving birth is nothing compared to what my heart was feeling. My husband was crushed and our families were disappointed and confused. Everything was so prefect, and it was such a blessing to finally have something good happen to our family who has and is still dealing with terminal illnesses, cancer and the like. Almost every member of my parent’s immediate family has been fighting something in the last 3 years, so the birth of twin boys was something everyone was really looking forward to. On top of our own personal heartbreak of our children dying, we also had the huge feeling of disappointment from our family and friends. We were all so looking forward to it as you could imagine.
Luckily, our families and friends are amazing. We had such overwhelming support from our entire community. I have never seen anything like it. My house was covered floor to ceiling in bouquets, and at the boys’ funeral, at least five pews of my Catholic church were filled with uniformed firefighters. It was breathtaking.
My amniocentesis came back perfect. Nothing was ever shown to have caused my premature labor. No infection, no chromosomal abnormality, no placental abruption, nothing. I am left with no answers or any indication if this will happen again.
How did it impact your partnership with your spouse?
Luckily, I am married to a great guy. He has stood by me, helped me, cradled me, took care of me, grieved with me. He has been a rock, but the kind of rock that cries with you and understands that I needed him more than ever. We are closer now that I think we ever could have been if this hadn’t happened.
How did it impact your relationship with your other children?
Fortunately, and unfortunately, we have no other children.
Was this experience your first with childbirth, or had you already had children?
This was the first.
How many children do you have now?
0 children, 2 Angels.
Has this experience affected your decision to have more children?
Yes, it has. To start, I only ever wanted two children, now I want dozens! (Not that my husband would let that happen J) We are trying to conceive again, but I am terrified of being pregnant again and having this happen again.
Can you tell us about how your other children were impacted by this experience?
See above…
When did you first learn of your child’s death?
Aiden was stillborn, and Wyatt was alive for about 5 minutes before he passed. They were too young to survive.
What community services/resources did you use to deal with issues/concerns related to being a member of this population?
I have branched out in a couple different ways. I attend the MISS Foundation’s support group meetings in Spokane as well as being a member of the Parental Advisory Council that was just formed by Heather Roberts of Providence Sacred Heart (and my nurse) along with a few other bereaved parents. I am also involved with the Sharing to Care support group at KMC and have spoken at a parent panel for the nurses at KMC. I am also trying to get certain features of the Forget-Me-Not program into KMC so parents can have the closure we experienced at Sacred Heart. I love to be involved, and the more I can share my experience and listen to other parents experiences, the more healed I feel.
How was your experience at the hospital? What made it better/worse?
KMC was your basic small town hospital. My doctor was great, he stayed with us through everything at KMC, including cancelling a days worth of personal obligations. Our first shift of nurses we fantastic! They were considerate, caring and compassionate. They cried with us, talked to us, prayed for us. Second shift was not so, but luckily we weren’t there too long. One of these nurses wrote up Aiden’s birth information like you would a living child, to document the weight and height, etc for the parents, but did a horrible and rushed job scribbling things out and even using a form dated 2002. So I have a document that says I had a stillborn six year old. They just didn’t get it. At KMC, there isn’t a lot of training on infant death, as the cases are usually shifted somewhere else, like Sacred Heart.
Sacred Heat was fantastic. The nurses were great, and I can’t say enough about Heather Roberts and the Forget-Me-Not program. She gave us something so sacred, and the ability to find closure. She came in the night Wyatt was born and helped us bathe him, do his measurements, dress him and best of all, hold him. He slept all wrapped up on my chest all night and that is something I will always cherish. I have anxiety and regret that I was not able to do this with Aiden.
At KMC, Aiden was not given any clothing, just a blanket that they sent home with me. When we arrived at the funeral home, he was just wrapped in a chuck. I was mortified. KMC has since changed their procedures to always swaddle babies – dead or alive! So luckily, no parent will ever have to see their beautiful baby wrapped in a paper towel.
What about after you were home? How did the community respond?
I mentioned this before, but our community was great. Everywhere we went and everything we did had nothing but caring and compassionate people. Like I mentioned, everyone was so excited about the boys, and I don’t mean just the family. My husband comes from a fourth generation Coeur d’Alene native family, so everyone knows us! The support we received was overwhelming and more than we could ever have imagined. I would not be able to speak so openly about our experience if we hadn’t had the support we did.
Did you have support outside your family—from friends? From the medical community? From your church? Work? Anywhere else?
Yes, yes and yes. In fact, my gynecologist’s elder brother who practices in the same office, came and sat in the waiting room with our families at KMC, and also followed up with a phone call a few days later. At Sacred Heart, I saw Dr. Statt, who I found out was just an interim doctor, so follow-up was difficult because he was the only one who really understood the situation and by the time I was ready to go back and talk with him about the what-ifs and the future, he was gone.
Father Bill Crowley from our Church came to KMC and stayed with us through everything and also baptized Aiden after he was born.
Are the services/resources available adequate to meet your needs? If not adequate what suggestions do you have for improvement?
At Sacred Heart, they were above and beyond. At KMC I am working on being more involved to help bereaved parents. Right after we had Aiden we were given a packet and told we had to contact the funeral homes within 24hours. That was that. So, I intend to develop a more tactful way of helping parents with funeral arrangements, or anything of the like. Also, KMC had a supply of premature clothing that was not offered to Aiden. I found this heartbreaking. My child is just as deserving of clothing as the next child.
If you could do something to improve the quality of your life as a member of this population what would you do?
Be more involved and spread the word that there are lots and lots of bereaved parents here to help any family through their nightmare. I have even given out all my personal information to KMC so I can come in and assist if a parent asks for help.
What were other family member’s reactions?
This was covered in the beginning…
How was the grief immediately, 6 months, one year, five years after the event?
Immediately, it was gut-wrenching. I couldn’t leave the house, I cried so hard I couldn’t keep food down. I really didn’t want to do anything except sit and pretend it didn’t happen. I just wanted my babies back, I just wanted to erase the last few days completely. My belly was gone, my breast were huge and I had no children.
It is now six months later, and I still don’t go a day, let alone an hour, without thinking of my boys. My heart still hurts and I have my moments, but for the most part I have overcome. I have learned how to not focus on their death, but the blessings in disguise that this experience had given me. I will forever feel them with me.
What was the difference between you and your partner during and after the event?
Well, obviously, as the mother I was physically with them for the entirety, so my connection was different than that of my husbands. He was just as excited and loved them just as I did, but he had only for the first time, felt them kick the night before I gave birth.
My grieving differs because I am a woman, and a mother now. I am fully gushy, mushy, lovey-dovey emotions and hormones so I was a mess. My husband was a rock, he held everything together. He still cried and showed his pain, but it was different. I think as a man, he felt like he had to just keep moving on for us. He still to this day, can’t watch TV shows that have anything to do with this sort of experience, and he is also very passionate about being involved just as I am.
How do you define coping and what does it mean to you?
Coping to me is understanding your loss and fitting it into your life. Cope is finding a “new normal” because nothing will ever be the same again. Coping doesn’t mean crying for days and moping around, it is just your body and mind’s way of reasoning and pulling you through the worst days of your life.
Is there anything you wish would have happened differently surrounding the experience?
HA! Wish it never happened….
I wish I would have know what was happening before my water broke, so I could have spent more time at Sacred Heart with both boys. I had a check up that Monday, but that is when my doctor assured me it was just round ligament pain. There is nothing he could have done to stop the labor, but we could have had more time to gather our family and thoughts to what was about to happen.
What else do we need to know?
Communication and connection with your patients is above all, the most important. Medical professionals are taught to not get ‘personal’ with patients, but sometimes the incident requires it. The doctors and nurses at Sacred Heart were so great, simply because they took the small amount of time, to get to know us, to share their stories and connect. One of my doctors found out I work at a winery and we had a long conversation about wine and vineyards. It had nothing to do with my experience, but it was something, and I will always remember her, because for a moment I focused on something other than the nightmare I was living and escaped. She took the time, and I am grateful.
You have to understand that your patients are experiencing the most devastating and heartbreaking event(s) of their lives and you are running the show. If you cant connect, be compassionate. Don’t rush, don’t ignore. The memories we have of this moment will be all we ever have of our child(ren), so make sure you take the time to make it a moment worth remembering.
I have sat on two parent panels and am doing another one on the 31st. A parent panel is like a question and answer board that sits in on a training for nurses and physicians so they may have a better understanding of your experiance and what can be done differently in the future. Because of a panel I did at a nurses training, KMC has changed their policy on how they handle infants/babies who have passed. When Mitchell and I arrived at the funeral home, we were shocked to see our beautiful Aiden wrapped in a chuck (essentially a medical paper towel) while Wyatt lay next to him bundled in a onsie and two blankets. KMC now ensures me their practice is to bundle the baby with a blanket, and even clothed if possible, when being transported through the hospital, lab and funeral home. Aiden did have a blanket, however they thought it would be better to give the blanket to us than robe his little naked body with it. Anyways...I'm doing what I can to help the next parent that has to live their worst nightmare. And this is a start...
Here is the interview: (its a long one!)
Where did you receive maternal care?
My prenatal care was with the Henneberg office in Coeur d’Alene and I delivered Aiden, Twin A, at Kootenai Medical Center, and Wyatt, Twin B, at Sacred Heart in Spokane, WA.
Can you walk us through the experience? What do you remember about your feelings surrounding this experience?
I am 25 and married to my high school sweetheart of almost 9 years. We have been married for 2, and last spring decided we were ready to experience the blessing of having children. We got pregnant right away and just a few short weeks later, discovered we were having twins, and eventually found out the sex – boys! We were elated, to say the least. I had a perfect pregnancy, read every book, ate all the right things, did everything I possibly could and everything went great, until it didn’t.
Through all my reading and research about pregnancy I was relieved to find myself five months pregnant with no signs of premature labor, miscarriage, etc and had read after 16 weeks, you are basically ‘in the clear.’ At 22 ½ weeks I had a couple days of intense pressure and cramping which my doctor explained was just round ligament pain and my uterus stretching. The cramping didn’t go away and I woke at 2:20am to a terrible cramp and my water breaking.
Apparently, they weren’t cramps, they were contractions. By the time I made it to KMC, I was fully dilated and delivery of Aiden was eminent. Aiden’s labor was intense because it was so sudden and then prolonged. There was no hurry to deliver him as Wyatt’s membrane was still in tacked, and rushing Aiden may have compromised Wyatt- there was a glimmer of hope for him. Aiden was alive and well when we arrived at the hospital, but was stillborn at 9:19am Monday, August 26th, bruised and banged up due to the hard labor. Immediately after delivering my Angel Aiden, the decision of going to Sacred Heart was our next focus to try and save Wyatt. We waited to MedStar to arrive to transport me and only spent a very quick and harsh couple of hours with Aiden before I was transported.
Upon being admitted to Sacred Heart, I was bombarded with questions, tests and prayers – lots of prayers. Wyatt was still hanging in there, fighting hard like always. His membrane had not ruptured and my contractions we fading. We kept monitors on him at all times and came to the decision of an amniocentesis to check for chromosomal abnormalities and infection to help rule out possibilities of why this was happening. If there were no abnormalities or infection they would perform a cerclage to give Wyatt a couple more days, or weeks, for the best chance of survival. Sacred Heart would not perform life saving measures on any baby younger than 24 weeks, 23 weeks if the parents insist. We had previously decided with doctors that we didn’t want Wyatt’s life to be spent hooked up to monitors and tubes, but rather in our loving arms without struggle or pain, if he were delivered before 26 weeks. The mortality rate of infants born at 23 weeks is 80%, 24 weeks, 70%, and 26 weeks, 50% (or something around there) and we just couldn’t see ourselves making our son fight that hard for his life…or what little of it he had.
The amnio sent me into intense contractions and excruciating pain. After 34+ hours and a couple days at home of cramping all without any pain medication, I could not handle any more. I was given something to ease the pain, but it wasn’t enough. I wanted to be numb. The docs ordered an epidural and while the epidural was being performed, my water broke. I delivered Wyatt five minutes later at 5:24pm on Tuesday, August 27th.
We were absolutely heart broken. I had never felt pain like that, and by pain I mean emotional, not physically. Giving birth is nothing compared to what my heart was feeling. My husband was crushed and our families were disappointed and confused. Everything was so prefect, and it was such a blessing to finally have something good happen to our family who has and is still dealing with terminal illnesses, cancer and the like. Almost every member of my parent’s immediate family has been fighting something in the last 3 years, so the birth of twin boys was something everyone was really looking forward to. On top of our own personal heartbreak of our children dying, we also had the huge feeling of disappointment from our family and friends. We were all so looking forward to it as you could imagine.
Luckily, our families and friends are amazing. We had such overwhelming support from our entire community. I have never seen anything like it. My house was covered floor to ceiling in bouquets, and at the boys’ funeral, at least five pews of my Catholic church were filled with uniformed firefighters. It was breathtaking.
My amniocentesis came back perfect. Nothing was ever shown to have caused my premature labor. No infection, no chromosomal abnormality, no placental abruption, nothing. I am left with no answers or any indication if this will happen again.
How did it impact your partnership with your spouse?
Luckily, I am married to a great guy. He has stood by me, helped me, cradled me, took care of me, grieved with me. He has been a rock, but the kind of rock that cries with you and understands that I needed him more than ever. We are closer now that I think we ever could have been if this hadn’t happened.
How did it impact your relationship with your other children?
Fortunately, and unfortunately, we have no other children.
Was this experience your first with childbirth, or had you already had children?
This was the first.
How many children do you have now?
0 children, 2 Angels.
Has this experience affected your decision to have more children?
Yes, it has. To start, I only ever wanted two children, now I want dozens! (Not that my husband would let that happen J) We are trying to conceive again, but I am terrified of being pregnant again and having this happen again.
Can you tell us about how your other children were impacted by this experience?
See above…
When did you first learn of your child’s death?
Aiden was stillborn, and Wyatt was alive for about 5 minutes before he passed. They were too young to survive.
What community services/resources did you use to deal with issues/concerns related to being a member of this population?
I have branched out in a couple different ways. I attend the MISS Foundation’s support group meetings in Spokane as well as being a member of the Parental Advisory Council that was just formed by Heather Roberts of Providence Sacred Heart (and my nurse) along with a few other bereaved parents. I am also involved with the Sharing to Care support group at KMC and have spoken at a parent panel for the nurses at KMC. I am also trying to get certain features of the Forget-Me-Not program into KMC so parents can have the closure we experienced at Sacred Heart. I love to be involved, and the more I can share my experience and listen to other parents experiences, the more healed I feel.
How was your experience at the hospital? What made it better/worse?
KMC was your basic small town hospital. My doctor was great, he stayed with us through everything at KMC, including cancelling a days worth of personal obligations. Our first shift of nurses we fantastic! They were considerate, caring and compassionate. They cried with us, talked to us, prayed for us. Second shift was not so, but luckily we weren’t there too long. One of these nurses wrote up Aiden’s birth information like you would a living child, to document the weight and height, etc for the parents, but did a horrible and rushed job scribbling things out and even using a form dated 2002. So I have a document that says I had a stillborn six year old. They just didn’t get it. At KMC, there isn’t a lot of training on infant death, as the cases are usually shifted somewhere else, like Sacred Heart.
Sacred Heat was fantastic. The nurses were great, and I can’t say enough about Heather Roberts and the Forget-Me-Not program. She gave us something so sacred, and the ability to find closure. She came in the night Wyatt was born and helped us bathe him, do his measurements, dress him and best of all, hold him. He slept all wrapped up on my chest all night and that is something I will always cherish. I have anxiety and regret that I was not able to do this with Aiden.
At KMC, Aiden was not given any clothing, just a blanket that they sent home with me. When we arrived at the funeral home, he was just wrapped in a chuck. I was mortified. KMC has since changed their procedures to always swaddle babies – dead or alive! So luckily, no parent will ever have to see their beautiful baby wrapped in a paper towel.
What about after you were home? How did the community respond?
I mentioned this before, but our community was great. Everywhere we went and everything we did had nothing but caring and compassionate people. Like I mentioned, everyone was so excited about the boys, and I don’t mean just the family. My husband comes from a fourth generation Coeur d’Alene native family, so everyone knows us! The support we received was overwhelming and more than we could ever have imagined. I would not be able to speak so openly about our experience if we hadn’t had the support we did.
Did you have support outside your family—from friends? From the medical community? From your church? Work? Anywhere else?
Yes, yes and yes. In fact, my gynecologist’s elder brother who practices in the same office, came and sat in the waiting room with our families at KMC, and also followed up with a phone call a few days later. At Sacred Heart, I saw Dr. Statt, who I found out was just an interim doctor, so follow-up was difficult because he was the only one who really understood the situation and by the time I was ready to go back and talk with him about the what-ifs and the future, he was gone.
Father Bill Crowley from our Church came to KMC and stayed with us through everything and also baptized Aiden after he was born.
Are the services/resources available adequate to meet your needs? If not adequate what suggestions do you have for improvement?
At Sacred Heart, they were above and beyond. At KMC I am working on being more involved to help bereaved parents. Right after we had Aiden we were given a packet and told we had to contact the funeral homes within 24hours. That was that. So, I intend to develop a more tactful way of helping parents with funeral arrangements, or anything of the like. Also, KMC had a supply of premature clothing that was not offered to Aiden. I found this heartbreaking. My child is just as deserving of clothing as the next child.
If you could do something to improve the quality of your life as a member of this population what would you do?
Be more involved and spread the word that there are lots and lots of bereaved parents here to help any family through their nightmare. I have even given out all my personal information to KMC so I can come in and assist if a parent asks for help.
What were other family member’s reactions?
This was covered in the beginning…
How was the grief immediately, 6 months, one year, five years after the event?
Immediately, it was gut-wrenching. I couldn’t leave the house, I cried so hard I couldn’t keep food down. I really didn’t want to do anything except sit and pretend it didn’t happen. I just wanted my babies back, I just wanted to erase the last few days completely. My belly was gone, my breast were huge and I had no children.
It is now six months later, and I still don’t go a day, let alone an hour, without thinking of my boys. My heart still hurts and I have my moments, but for the most part I have overcome. I have learned how to not focus on their death, but the blessings in disguise that this experience had given me. I will forever feel them with me.
What was the difference between you and your partner during and after the event?
Well, obviously, as the mother I was physically with them for the entirety, so my connection was different than that of my husbands. He was just as excited and loved them just as I did, but he had only for the first time, felt them kick the night before I gave birth.
My grieving differs because I am a woman, and a mother now. I am fully gushy, mushy, lovey-dovey emotions and hormones so I was a mess. My husband was a rock, he held everything together. He still cried and showed his pain, but it was different. I think as a man, he felt like he had to just keep moving on for us. He still to this day, can’t watch TV shows that have anything to do with this sort of experience, and he is also very passionate about being involved just as I am.
How do you define coping and what does it mean to you?
Coping to me is understanding your loss and fitting it into your life. Cope is finding a “new normal” because nothing will ever be the same again. Coping doesn’t mean crying for days and moping around, it is just your body and mind’s way of reasoning and pulling you through the worst days of your life.
Is there anything you wish would have happened differently surrounding the experience?
HA! Wish it never happened….
I wish I would have know what was happening before my water broke, so I could have spent more time at Sacred Heart with both boys. I had a check up that Monday, but that is when my doctor assured me it was just round ligament pain. There is nothing he could have done to stop the labor, but we could have had more time to gather our family and thoughts to what was about to happen.
What else do we need to know?
Communication and connection with your patients is above all, the most important. Medical professionals are taught to not get ‘personal’ with patients, but sometimes the incident requires it. The doctors and nurses at Sacred Heart were so great, simply because they took the small amount of time, to get to know us, to share their stories and connect. One of my doctors found out I work at a winery and we had a long conversation about wine and vineyards. It had nothing to do with my experience, but it was something, and I will always remember her, because for a moment I focused on something other than the nightmare I was living and escaped. She took the time, and I am grateful.
You have to understand that your patients are experiencing the most devastating and heartbreaking event(s) of their lives and you are running the show. If you cant connect, be compassionate. Don’t rush, don’t ignore. The memories we have of this moment will be all we ever have of our child(ren), so make sure you take the time to make it a moment worth remembering.
Wednesday, March 25, 2009
To start things off...
So, I have to start this of by taking a moment and reminisce…give a quick background. Who knows where this will go!
I have been blessed in my life to have an amazing group of friends that I now consider my family. A handful or two of them have been around since the “good ol’ days” and even beyond (Ashley, Phaedra…) I still can’t believe how tight-knit the group of friends I have is. Thru thick and thin, we have all been there for each other, and we seem to keep weaving closer and closer together.
Ashley and I go back to 5th grade doing flips of the swing set, passing notes to our “boyfriends” and learning the drama of being a girl. We have grown apart over the years, and then back together, and apart and together… I guess just as much as anyone does with their childhood friends. I adore her, and we have so much fun together when we are able to. Ashley and I ended up living together with Jessie Capaul (married to Justin – Mitchell best friend/cousin among other things J) and we all became the best of friends. Through this experience we all became entangled with our boyfriends (ex-boyfriends and husbands now!) and their careers and hobbies as firefighters. This family is beyond amazing. Truly a brotherhood and something I could not imagine my life without. Few of my high school friends and many of my closest friends now are involved with the fire department and it gives the word friendship an extr
a dimension, a dimension so deep and so cherished. It actually makes me well up just typing about it. From Mitchell and Justin following their long family line and my never-ending crush on the DJ boys at Spotlight, to Kris Schmitt – a youth group friend whose home we would crash and raid his liquor cabinet every weekend, Jason Scott- the least likely candidate to ever be my best bud, Jamey Hull and Adam Knight- two guys I never thought I would imagine saying are some of my most cherished friends…and family. Along with these boys, their wives and girlfriends and many, many others that I am sorry I haven’t mentioned, make up my life and my joy.
I wish I had more time to spend with all my amazing family and friends, but life lately has just not been easy. Just when Mitchell and I thought we had it all, it all has been taken from us.
Mitchell’s mom, Debbie, was diagnosed with ALS in the spring of 2006. ALS (also called Lou Gehrig’s Disease) is basically a life sentence with a 5-year best case scenario. This woman is as close to a Saint as you can get, and I love her dearly. These days, she fights just to sit upright or get a few hours sleep. Its heart wrenching to watch her slowing fading from us, but luckily we have had the blessing of spending lots and lots of quality time with her while she is with us. Along with Debbie’s Diagnosis came Mitchell father, Chris’s diagnosis of Acute Lymphocytic Leukemia six months later. Chris was lucky enough to get treatment, and the leukemia is in remission. Then, just months after we were married, my parents announced they were getting a divorce after 25 years of marriage. WHAT! Seriously. I still can’t believe it. I hate it. I hate that my kids will have Grandmas house, and Grandpas house. I was so proud that my parents and stuck through it and persevered when I watched countless friends and family members give up so easily. Then came the multiple cancer diagnosis including our best friend Justin’s testicular cancer(mind you he is only 26 years old) throughout the family along with multiple other conditions. It seemed we were all fighting an uphill battle. Then, we got pregnant. What excitement! Everyone was so overjoyed to have something uplifting, something great to happen instead of all the downers we had been going through, especially when we found out it was twin boys! We were ecstatic to say the least. The pregnancy was perfect, right out of a book, until it wasn’t. August 24th 2008, I started cramping and feeling tremendous pressure and two days later gave birth three months too early to our Angels, Aiden and Wyatt. At 22 ½ weeks, they were 1 week shy of being able to sustain life and accept life saving measures.
Devastated.
These were the children I envisioned spending my every day with, cooking meals for, taxing around town, watching baseball and football games, weddings, grandkids….
I have been blessed in my life to have an amazing group of friends that I now consider my family. A handful or two of them have been around since the “good ol’ days” and even beyond (Ashley, Phaedra…) I still can’t believe how tight-knit the group of friends I have is. Thru thick and thin, we have all been there for each other, and we seem to keep weaving closer and closer together.
Ashley and I go back to 5th grade doing flips of the swing set, passing notes to our “boyfriends” and learning the drama of being a girl. We have grown apart over the years, and then back together, and apart and together… I guess just as much as anyone does with their childhood friends. I adore her, and we have so much fun together when we are able to. Ashley and I ended up living together with Jessie Capaul (married to Justin – Mitchell best friend/cousin among other things J) and we all became the best of friends. Through this experience we all became entangled with our boyfriends (ex-boyfriends and husbands now!) and their careers and hobbies as firefighters. This family is beyond amazing. Truly a brotherhood and something I could not imagine my life without. Few of my high school friends and many of my closest friends now are involved with the fire department and it gives the word friendship an extr
a dimension, a dimension so deep and so cherished. It actually makes me well up just typing about it. From Mitchell and Justin following their long family line and my never-ending crush on the DJ boys at Spotlight, to Kris Schmitt – a youth group friend whose home we would crash and raid his liquor cabinet every weekend, Jason Scott- the least likely candidate to ever be my best bud, Jamey Hull and Adam Knight- two guys I never thought I would imagine saying are some of my most cherished friends…and family. Along with these boys, their wives and girlfriends and many, many others that I am sorry I haven’t mentioned, make up my life and my joy.I wish I had more time to spend with all my amazing family and friends, but life lately has just not been easy. Just when Mitchell and I thought we had it all, it all has been taken from us.
Mitchell’s mom, Debbie, was diagnosed with ALS in the spring of 2006. ALS (also called Lou Gehrig’s Disease) is basically a life sentence with a 5-year best case scenario. This woman is as close to a Saint as you can get, and I love her dearly. These days, she fights just to sit upright or get a few hours sleep. Its heart wrenching to watch her slowing fading from us, but luckily we have had the blessing of spending lots and lots of quality time with her while she is with us. Along with Debbie’s Diagnosis came Mitchell father, Chris’s diagnosis of Acute Lymphocytic Leukemia six months later. Chris was lucky enough to get treatment, and the leukemia is in remission. Then, just months after we were married, my parents announced they were getting a divorce after 25 years of marriage. WHAT! Seriously. I still can’t believe it. I hate it. I hate that my kids will have Grandmas house, and Grandpas house. I was so proud that my parents and stuck through it and persevered when I watched countless friends and family members give up so easily. Then came the multiple cancer diagnosis including our best friend Justin’s testicular cancer(mind you he is only 26 years old) throughout the family along with multiple other conditions. It seemed we were all fighting an uphill battle. Then, we got pregnant. What excitement! Everyone was so overjoyed to have something uplifting, something great to happen instead of all the downers we had been going through, especially when we found out it was twin boys! We were ecstatic to say the least. The pregnancy was perfect, right out of a book, until it wasn’t. August 24th 2008, I started cramping and feeling tremendous pressure and two days later gave birth three months too early to our Angels, Aiden and Wyatt. At 22 ½ weeks, they were 1 week shy of being able to sustain life and accept life saving measures.Devastated.
These were the children I envisioned spending my every day with, cooking meals for, taxing around town, watching baseball and football games, weddings, grandkids….
I am just now able to start seeing the forest for the trees. As much as I hate they were taken from us, it is starting to show a blessing in disguise. I have found a new passion and a reason to keep going. That passion stems from our experience at two different hospitals and one person in particular. Our nurse, Heather Roberts, at Sacred Heart who helped us find closure and tell us what we needed to hear in the weakest and more raw hours of our lives. I have changed my major from accounting/business to nursing. I just have this urge inside me to help other families going through similar experiences with their pregnancies and children. I can seem to read enough or be involved enough on the subject of infant death, preterm labor and the like. I am just a sponge trying to retain anything and everything I can. Hopefully one day, I can make a difference for a family who never knew they needed me.
Sometimes, I also think my Angles are up in Heaven waiting for their Grandma Debbie. They will be there to keep her company and her heart warm. I know there are few things consoling Debbie’s mind, but I know seeing our Boys in Heaven gives her peace.
Mitchell and I sold our house in February of 2009 and we are now living with his parents in his childhood home. His father, Chris, doesn’t want to live there without Debbie which I find completely understandable. So, we are spending literally all our time at home with Debbie during these last few months or years we have with her. Once the inevitable happens, we will graciously make their home our own, and with any luck, raise our unborn children and make thousands of new, happy memories.
Sometimes, I also think my Angles are up in Heaven waiting for their Grandma Debbie. They will be there to keep her company and her heart warm. I know there are few things consoling Debbie’s mind, but I know seeing our Boys in Heaven gives her peace.
Mitchell and I sold our house in February of 2009 and we are now living with his parents in his childhood home. His father, Chris, doesn’t want to live there without Debbie which I find completely understandable. So, we are spending literally all our time at home with Debbie during these last few months or years we have with her. Once the inevitable happens, we will graciously make their home our own, and with any luck, raise our unborn children and make thousands of new, happy memories.
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