Wednesday, April 30, 2008

a really great post on another blog

the blog i was reading was that of Dr. Joanne Cacciatore

excerpt of her post:
Our own grief can suffocate our senses, the very senses that would grant us deep compassion for others. Empathy requires us to stand outside our own grief and recognize pain in the lives of others. When we are able to truly do that- to reach beyond our own boundaries of loss, our hearts become bigger, and we are able to find healing in our connection to and concern for others.

check it out the full post if you have the time. it is worth the read.

peace, light, love,

~Christine

Friday, April 25, 2008

Birthdays

My Dear Alexandra,
Today is my Birthday and all I want is a visit from you. (Well we both know what I really want but I'll see you again one day) I'm very sad about my Birthday today because all I can think about is never being able to celebrate your sweet birthday with you by my side. I know you are in my heart but I ache to have you with me in person. So for my birthday wish I wish for you to come and stay close to me today so I can feel you near and visit me in my dreams tonight.
I love you & miss you with all my being. Hugs & Kisses Peanut!
Love, Mommy!

Sunday, April 20, 2008

Research Survey: Experiences Receiving Stillbirth/Perinatal Loss Diagnosis

got this in the email ladies so i am passing it on... please feel free to do the same.
Hi folks-

Suzanne Pullen here. I'm wondering if you would be willing to forward this email and link about a study I am doing involving parents who have had a loss to anyone you think might be interested.

https://www.surveymonkey.com/nld

As you may know, I am a bereaved parent who had a stillbirth three years ago. I am currently co-conducting a survey about medical bad news delivery and the communications between patients and care providers about their diagnosis. I am specifically hoping to reach parents who have had a stillbirth, neonatal death (death of a child within 28 days of birth) or a pregnancy loss.

We are hoping to learn more about this kind of communication and offer insights to care-providers about the effects of these interactions. Data collected from this confidential survey will be used for completion of a course project in the master’s program at San Francisco State University. The survey is confidential and should take approximately 25 minutes to complete.

If you have any questions, I would be happy to answer them. I can be reached by email at spullen@sfsu.edu.

I have attached a copy of the survey announcement, in case you would like flyers to post or circulate.

I also have hard copies of the surveys and if you send me an email with the street address, I would be happy to mail them to you.

I send my sincere thanks for considering helping get the word out about this study,

Suzanne Pullen
spullen@sfsu.edu
www.surveymonkey.com/nld

If you like, you can also post a link to the survey on a website by pasting this link:

Click Hereto take a survey on neonatal loss


I thought I would share Tristan's story on the group page....I apologize as in it's long.....

Tristan Alexander Goodwin
After losing 2 pregnancies early in pg, I lost the first a little boy Xavier Ahren at 9 w 5 d, and then a blighted ovum at 8 w 3 d, well in June of '07 we were blessed with our little Tristan, we were trying so I was kind of hoping for my bfp, I will never forget the day 6/27/07, 2 days after cutting my hair for the 1st time in 5 years!! Well fast forward, we have some first trimester bleeding, I start on Prometrium ( I always have progesterone issues) and put on bedrest from 5 weeks to 12 weeks, at 12 weeks everything was perfect, you can about imagine how exited we were, we were finally going to be parents, we had passed that trying first trimester....On to 19 weeks, we have a boy's name and girls name picked out, we are so elated to find out we're having a little boy, Daddy's little huntin buddy and mommies cuddle bug, oh we were so excited, we would talk all the time about Tristan, I was getting his nursery done, slowly, but having fun with it......fast forward to 30 w 5d we are having 3/d pics made of our little guy, how cute was he!? He loved his foot, he constantly had his foot infront of his face, he was smiling, and just looked so precious and perfect, there was one time he got upset, you could just see it on his face, it's like leave me alone already I'm trying to sleep in here!! It was so funny and cute, I just knew he was going to be full of personality, little did I know what was ahead of us in the next couple weeks....
31 w 3 d I was admitted into the hospital for a virus, I was throwing up, couldn't hold anything down and we were afraid of getting dehydrated and going into preterm labor, well I get better and get to go home, everything is perfect, Tristan is moving around like crazy, and since I was so tired from being sick, I was just relaxing and resting as much as I could, well 33 weeks exactly and I'm sitting at my desk, posting on my baby board when I was finished I was going to get up and start cleaning up well tmi I had been a little on the constipated side and was starting to get a cramp, so I thought I was just going to have to use the restroom, well I didn't realize how sharp the cramp was til I stood and it was like a hot poker going from the center of my abdomen straight through my back and out the other side, I tiptoed to the b/r, and when I sat and pushed just a little, enough to empty my bladder, I hear a pop, and then a gush of liquid just started pouring out of me, the cramp was getting more intense, and I sat there and thought to myself ok my water just broke, i'm 33 weeks, we can handle nicu for a few weeks, Tristan is coming today!!! Then I notice the water looks really dark, so I wipe and there it is blood and lots of it, and clots as big as my hand! I was so scared I put some tissue there and went to get the phone called my husband, and he was on his way home, he called 911 for me as I was starting to feel really faint, the room was spinning, I was so hot and sweaty, and felt so much pain, like a ripping sensation circling around my stomach to back, it was intense. Then the ambulance arrive, a couple of incompetent morons, when they walked in the house they look at me and ask me the stupidest question
amb: are you bleeding
me: yes
amb: are you passing clots
me::yes
amb: well you miscarried
me: crying and begging please don't say that
amb:well that's what happens when you're pregnant and bleed, can you get yourself on the gurney
me: yes, (throw up all over my floor)
amb: shoves bag in my hand and informs me not to throw up in his bus
then proceeds to carry me out of my house with no blanket in only a tshirt and panties, I was appalled then roll me over those stepping stones, instead of picking the gurney up, then they leave my house after being told on 3 different occasions that we're going to Women's and Childrens, and my dr is dr hill they went the wrong direction TWICE!! I notice out the back window that we're passing Lafayette General which is about 15 minutes from my house, vs. W&C that is 5 mins from my house.....Well my mom, and Aaron both beat me to the hospital, we finally get there and all they've done for me is give me an iv of saline, by this time I'm not 100% completly coherent anymore, I vaguelly remember seeing my mom and brother, but I do remember getting into triage up at L&D she couldn't find the heartbeat and I kept telling Aaron that Tristan's gone, they kept telling me no maybe he's just in a position where we can't find it! Then I remember hearing Aaron say her eyes are rolling back, the next I remember hearing her say she's 2cm dialeted then o shit I need help in here, and they started rubbing my chest rather hard, and slapping my face, I remember hearing and feeling this but I couldn't respond, I remember a room and a lot of people and the words start cpr, we need to intubate, and then I remember opening my eyes and my dr was there telling me they couldn't find any fetal heart activity,and needed to operate fast to see where I was bleeding from cause I was losing a lot of blood, they wouldn't let aaron back there with me, well the next thing I remember was someone saying there's going to be a slight pinch in your throat, well at that exact moment my throat closed up, I couldn't cry, scream, nothing, I was so scared I remember grabbing the 2 people next to me and at that moment I remember the feel of my dr cutting me open and I tried to move my legs and couldn't as they were strapped down, then everything went black.....When I woke up they were wheeling me into recovery(happens to be the exact same place they took me after my 2 d&c's....) well I remember reaching for my belly and asking crying out for Tristan, and the nurse and social worker and Aaron were there, (he'd already seen Tristan, I didnt' know this yet) But the look on his face told me everything I needed to know, and that's when I lost it, and Ms. Mary the social worker then asked if I would like to see and hold my son, and she explained what he would look like and what i should expect, and that he was bleeding some so I had to keep a wash cloth under his mouth..oh he was so beautiful, I will never forget the feel of him in my arms, the smell of him, the feel of his lips when I kissed them, and the brown of his eye, when I snuck a peek...there he was my little Tristan, the same little guy that was having a kick boxing class that morning was now laying lifeless in my arms, it's still so hard to grasp, it's been 10 weeks and i am just now getting to the point where being around my bff's baby is pleasurable, I can play with her and yearn for what I don't have, and it hurts, but it also feels perfect....I can't explain the feeling I have when I have her in my arms....I"m just now cleaning my house, getting out in public, and it sucks, but I have to push forward, Tristan wouldn't want me to remain sad, although my sadness will never leave me, I had/have to force myself out of severe depression, and the only way I can do that is to keep my hands and mind busy!! I still have and still visit his room/crib several times a day, i will hold his outfit and rock it, as if I were rocking him and look out the window up at the sky and just talk to him, his outfit, socks, bonnet, and the little plastic brush they used on him still smell so much like him, I smell them daily, I feel him all around me.

Photobucket

Saturday, April 19, 2008

March of Dimes

it time for the march for babies . one of our mom's is walking her team is

Lily & friends

please support her walk efforts if you can.

if you are also wlaking and would like me to link to your team page please comment.

Thursday, April 17, 2008

NY State: Certificate of Birth Resulting in Stillbirth Bill--STALLED

Dear readers of this blog I am asking you all once again to help us in memory of all our children that are remembered here and all over the internet.

Please click the link below and let this assemblyman know just how important it is for families like us to be validated despite our loss. Especially, families that live in NYC we do not and will not receive a death certificate. So as far as our federal and local government is concerned our our children never existed. We know this is not the case but it sure would help to have a CBRSB. it would cost them very little to pass this bill, but it would have far reaching affects in healing many families.

The link below will take you to a web-form that will take just a few moments of you day to complete. There is only 1 undecided assembly vote, which is the Leading assemblyman of the Way and Means Committee where the bill has stalled for the second year. this is a simple request for families suffering a terrible tragedy. Give the the gift of validation that they their children count that they matter, that their child that has died had a life that mattered.

Even if this particular type of tragedy has not touched your life personally please take the time to click the link and send Assemblyman Farrrell a message of support for this bill, if you live in another state please also click the link you never know what might reach him by way of support.



The Certificate of Birth Resulting in Stillbirth bill has passed the Senate and is now STALLED in the Assembly's Ways and Means Committee under the leadership of Assemblyman Herman D. Farrell.


This is the same committee where the Bill stalled last year!

They get to decide:

+ Do parents who gave birth to a stillborn child deserve recognition of the birth process?

Assemblyman Farrell needs to hear from you. He needs to know that this bill is important to you -- as a mother, father, family member, friend, co-worker -- one who has suffered the tragedy of a stillborn child.



Your immediate help is needed NOW and will take less than one minute of your time.



Log on to the link: http://missingangelsbill.org/~jnevels/support.php?se_id=22



And send your SUPPORT for the CBRS Bill. It will only take 30 seconds.

Then *very importantly* forward the link to family, friends & coworkers. Ask them to log on to show their
support and to forward the link to their family, friends & coworkers.

This system works and to be effective we need hundreds of families to click on the link. Doing so will show Assemblyman Farrell and the Ways & Means Committee that this Bill IS important to NY families. The passage of this bill will allow parents who have suffered the tragedy of a stillbirth, the option to receive a Certificate of Birth Resulting in Stillbirth to acknowledge the birth process.



To watch the progress of the CBRS Bill, visit: cbrsbill.blogspot.com


Thank You for your support!


I all thank you for your support of this bill and bills like it your state. It does make a difference and it is something each of you can do to make a difference in our life and the lives of others like us.

with much love and gratitude for you help in this matter
Christine (Lucy's mom)

Friday, April 11, 2008

Sorry Peanut

I'm so sorry little Peanut,
Alexandra my last message to you was thanking you for bringing me another little peanut. Seems I can't hold on to this one either. I'm so sorry I have failed yet again. How could I not know about you being all tangled up and not being able to bring you into this world safely - that's my job as your Mommy & I failed. Now you bless me with another peanut and I can't even hold on to this one for 6 weeks. Alexandra please find it in your heart to forgive me and know that I would have done anything to save you.
I love you and miss you terribly.
Love, Mommy xoxox

Thursday, April 3, 2008

Stillbirth Research Survey

hope you are all doing well. thought i would share something. this came into my inbox this morning i am sharing it please pass it on and in the box where it asks where you heard about the survey please put this blog. it is just so that Peggy knows where you are coming from. please feel free to pass the info on.


thanks.

From: Peggy Lambert Peggy.Lambert@mail.wvu.edu

Subject: Re: Help

Hello,
I am a nurse having worked 15 years in Labor and Delivery and now doctoral candidate at West Virginia University. Would your website be willing to post the link to my survey about stillbirth interventions in the forum? Participation would assist me in learning more about what interventions were important to women at the time their baby died and what feelings they experienced then and currently. This research is intended to improve the care provided to women at the
time of stillbirth.

The survey is online and will take about 30 minutes
to complete. If you have any questions, don't hesitate to write or
call me. For your review, the survey may be found at:
www.surveymonkey.com/plf


Peggy Lambert Fink, MSN, FNP-C
plambert@wvutech.edu
(304)465-1496

Wednesday, April 2, 2008

Isabelle Hope


My name is Sarah, and my husband James and I lost our beautiful baby girl on feb. 28, 2008.


When I first found out I was pregnant I was scared to death. I was 19, living with my parents, and going to college full-time. After going to the doctor and seeing my baby on the ultrasound though, I was changed forever. My baby was perfect and I loved her so much.


At our first ultrasound appointment we were told that there was no fluid around the baby and that it looked like the baby was dieing. The ultrasound tech also told us the baby was not measuring correctly. My heart was broken thinking that my baby was dieing in there. We were immediately sent to get a level 2 u/s. The u/s techs at the level 2 u/s told us that our baby was measuring fine and that the fluid was on the lower side of normal but everything was ok. We got pictures of the baby and left feeling like everything was going to be okay.


The rest of the pregnancy seemed to be going fine. The doctor said I was measuring good and everything seemed fine. One day I got in an accident and immediately went to the doctor who said everything was fine and he wouldnt give us an ultrasound. I had to get a rogham shot because I was rh- and the baby was rh+. Trusting the doctor I still thought everything was fine. In late January however I began to swell and showed my doctor that I was swelling but he said it was fine. We had told the doctor that my mother had pre-eclampsia and we thought I was developing it but he assured me that even though my bp was up and I had gained a lot of weight fast, that because I didnt have protein in my urine I was fine. Once again we believed him and thought everything was fine.


At 36 weeks we thought we would get another ultrasound but the doctor said I wouldnt get another ultrasound unless he felt there was something wrong with the baby. We fought with him to get an ultrasound explaining that our other preggo friends got one at 36 weeks and shouldnt he make sure she was ok especially since before we were told she had low fluid. He told us no.


On Feb. 26th I went in for my normal OB appt. and my bp was elevated. The doctor had me lay on my left side which made my bp go down some. He sent me home and told me he wanted to see me again on the 27th to check my bp again and possibly admit me.


I woke up on the 27th and had a weird feeling. When I ate breakfast I noticed that the baby was not moving like she usually did but I figured it was normal since it was the end of the pregnancy. I met my mom at her work and talked with a few of her colleagues about the baby. I still had a weird feeling but thought it was just nerves about possibly being admitted. My mom drove me to the doctors office where they checked my bp. My bp was still high so they made me lay on my side and took it again. It was still high. They decided to get the baby's hb on the doppler but seemed to be having a hard time finding it. The nurse thought it was just the doppler so she got another one and she still had trouble finding it. She went and got the doctor who came in and tried to find it and said he had found it. He hooked me up for a nst and they noticed I was having contractions. He told me he wanted to get a reading for 15 mins and then decide if he wanted to admit me. He ended up leaving me for 30 mins and came back and said that he didnt like what he was seeing so he was going to admit me and do a 24 hour urine and that he would be over at L&D in 2 hours to see how I was progressing and possibly induce.


We were so excited. We called everyone and told them that we may be having a baby today. We got the registration papers and walked to l&d. We got our room and I got into my gown and I was so excited. A nurse came in to hook me up to the monitors but was having trouble with getting the baby's heartbeat. We told her the doctor had the same problem and we showed her where he found it. She placed the monitor on the spot we showed her and then she left the room and came back with a nurse and 2 u/s checks. She said she didnt want to scare me but did we just walk over here after hearing the heartbeat. We told her yes. The 2 u/s techs, which happened to be the same ones we went to the first time we had a scare, started to look for a heartbeat. They couldnt find one so they tried using color and still couldnt find one. They called my Ob and he came over and looked at the u/s machine and then proceeded to tell me he was sorry but there was no heartbeat. My mom freaked and kept asking him how when we just heard it. He explained that what we could have heard was my hb echoes. I was devastated. My husband had to call everyone and tell them our baby was dead. It was awful and all the doctor proceeded to say was some grief is expected but dont let it get out of control. We wanted to kill him. We just lost our baby and all you can say is some grief is expected?


I was put on magnesium that night to bring my bp down and given a cervadil to help progress. The next morning I was given pitocin but was still not progressing very well. My Ob came in and broke my water and when he did there was hardly any fluid.


At 9:34pm after 15 min. of pushing, Isabelle hope Burford came into this world. She was 6lbs. 1oz 19in. long. She had a head full of red hair just like me and she had my big feet.


The first thing out of the doctors mouth while Isabelle was still making her way out was that my baby had mold which proves she had been gone for awhile. We went off on him and told him that it was not mold and that she had not been dead very long because we knew for a fact that she was moving that Tuesday. We sent the placenta off but the results were normal. We will never know what caused our baby Izzy to die because we opted not to have an autopsy.


After losing Izzy we decided we wanted to switch doctors and find one who was more compassionate and who knew more about what he was doing. One of the main reasons we decided to switch was because our OB said that if I get pregnant again he wouldnt do anything different with the next pregnancy. We retrieved our records from the doctor and found that I had been having some warning signs throughout the pregnancy. In January at the same time as my bp went up and my weight, the baby's hr had dropped and I had protein and a trace of blood in my urine. I was never told of this. They would not check the urine until we left usually or right before, and when we asked about how it was they said it was fine and had no protein. The next time I get pregnant I am going to make sure the doctor shows me my records and I am not going to take everything for granted.