Missing my baby angels Kassandra and Nevaeh

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Missing my baby angels Kassandra and Nevaeh


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Oh lord, I miss her so much, my baby girl. I wish things were different. I wish I was holding her in my arms. I wish I was up now at 3:50 am doing my best at breastfeeding her and changing her diaper. I wish I could snuggle her and tell her how much I love her. I don't understand why it had to be her. Why we have to go through all this. Why did she have to suffer with a broken heart, why did she have to die. I want her back so bad, I'd do anything. How come she died I would have taken her place if you let me. The possibilities she possessed, she could have done many more great things on earth than me. You saw her she was a fighter. She didn't want to go, she wanted to stay here with her dad and I. If she had to go, why didn't you take me too. She needed me, I need her too. I just can't get over this question of why. Even if I know in my heart it was for the best and part of the "greater plan" I wished we were not involved in that plan.

I know I can't have her back. But at least let me know she made it safely. How is she doing? What do you do together. I'm so worried about her. Dose she really know how I feel? Lord please tell me, tell me now. I pray but haven't gotten any answers. I need your help Lord, tell me what to do.

Kassandra, I love you so much. I never asked for it to be this way. I hope you are alright. I miss you so much, and so dose your daddy. Your big brother Nicholas says your name a lot. He calls you "baby Aussie". Today Nick called you "baby Sassie" for the 1st time. He's trying so hart to say it right. He looks at your pictures everyday. Sometimes he even kisses them. He's always trying to be close to you. He likes to get into your things. Please sweetheart watch over him, don't let anything bad happen. I can't handle losing another one of my children. Love you always!!! MOM

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I suppose I need to introduce myself and my dear little Kassandra. I just don't know how I'm going to do it yet. Write a summery, give full story, post the link to her website, or just start from this point. Right now I'm in tears so I'm not going to do any of it. I do promise to figure it out soon.

I hope having a journal is going to help me somehow. Because I'm so unsure of everything I do and think. I really need to concentrate on it being a journal, I might have to make it private, but right now I'm going to leave it open. Maybe someday it will help someone somehow. Helping others is the only way I can somewhat start to justify why this had to happen to us.

Kassandra had a terrible heart defect she died 5 days after birth. I miss her so much. I'm done typing for now, My keyboard is sopping wet.

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Just thinking again, I was up the rest of the night debating on what to do. I think I'm going to take all my PG posts and post them here. I think I want a place to have all of my feelings and stuff together and not it separate places. I don't feel like journaling on her website any more. I am however going to do the updating on the time we spent in the NICU, I just haven't been able to pull myself together to do that. I think this will be a good place to journal my thoughts and feelings. I don't want my craziness on her website. Its funny though I go to her website everyday even though I wrote all I reread it all the time and think, why did I post that how come I forgot this. Its really nice that there's a guest book in it, it helps me get through though days. I feel good when I start new projects in memory of Kassandra, I really hate it when I finish them or have no more I can add. I also procrastinate when it comes to doing the very end stuff, because it just seems she's farther away again. Hopefully This journal will stay here forever And I will keep writing in it, that way I don't need to feel that way with this too.

Good afternoon Kassandra I'm am thinking of you again, I keep wondering what you look like today. What things would be like if you were here. You were such a beautiful little girl I believe you are a beautiful angel now. If you were with us right now I wouldn't need to be on this stupid computer. I keep wondering if you made it would you still be in the hospital? Or would be home in your little Winnie the pooh bassinet. I even had an angel care monitor setup for you. You'd be sleeping right next to mommy and daddy every night. We'd probably take turns watching you rest. I would have done anything to keep you here. Maybe that's why you had to leave. Would have it been to painful for you, I would not like that. I always had hope that they could fix it all and you'd be fine and a happy little girl. I love you always, love your MOMMY!

Lord I'm sorry I was so angry last night, its just so hard to not know how she is. I am very happy knowing that she is not in pain anymore. Please continue to take care of her. Thank you

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I'm going to start from mine and DH's beginning because it is a part of Kassandra's life even though she wasn't made yet.

Andy and I started dating July 25th, 1999, we got engaged on x-mas eve that same year. On November 18th 2000 we got married. Andy was my first everything, I was so much in love. We TTC for awhile, when we gave up I found out I was pregnant. We were so excited, We took 3 tests because we couldn't believe it. That was the best anniversary we ever had!! We finally had our son Nicholas on July 13th, 2004. We wanted to have more children but planned on waiting till Nick was 2-3yrs. When he was 9m we found out that I was pregnant with Kassandra. We were shocked for the first few days. After the shock wore off we were extremely happy adding onto our family.

3/10/06 I feel so guilty now, I can't believe I reacted that way. When I found out I wondered around the house saying OMG, OMG. Maybe this whole thing is my fault, the Dr. said the the heart defect probably formed around the before I was 6 weeks along, I found out at about 5 weeks. We were under so much financial stress of losing our business due to raising costs, our home and income was attached to our business so that makes things much worse. Before I found out that I was pregnant I was drinking and smoking, It probably was ally my fault, I wasn't expecting to get pregnant yet, I was using contraceptive films at the time. The night she was conceived I was drunk and grabbed a cleansing film instead of a contraceptive film, could this have done it? Andy thinks its his fault because at that time he was taking antidepressant pills and drinking a lot. We were also fighting a lot at that time could have it been that. Oh I just know It was all our fault why did we mess up like that, how could we have done that to an innocent child. We are not proud of the things we have done and sometimes we feel like we are being punished for that

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TUESDAY, MAY 17, 2005 08:19 AM, CDT
Guess what every one... I'm pregnant!!!!And I'm on my way to my 1st ob apt. I was in shock at first but now I'm OK. I think the babies will be around 18m apart. My midwife is going to chew me out. LOL, She really pushes the 3yr spacing. She told me after I had Nick that that was best for my body, Nick and new baby. I was like whatever, I'll have one when I want to. But I did try to vow that I'd like Nick potty trained, or close to it anyways. Oh well, God never gives us more than we can handle.

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TUESDAY, MAY 17, 2005 05:26 PM, CDT
My 1st OB apt was May 17th 2005, and my 1st U/S was June 8th. Both went great. During the first 4m of my pregnancy I was really ill lots of nausea, headaches, low BS, low BP dizziness and blackouts. I had to be hospitalized for IV fluids. I was always kind of worried but then figured maybe I was having a girl and that's why I was so ill.

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TUESDAY, MAY 17, 2005 10:16 PM, CDT
Hehehehe!!! If only Nick would be potty trained by then. You wish!

Wow, wouldn't Josh be proud if the baby was born on his birthday?!!! Just think, our babies will be 3 months apart if she's right. What will Mom do??? She called last night and I said "Hi Grandma!" She said she can't believe that in a few months the number of grand kids will have tripled! I bet she'll be so excited. She loves being a grandma!
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THURSDAY, MAY 19, 2005 10:19 PM, CDT
So she finally believes me now!!

Katie

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FRIDAY, MAY 20, 2005 12:27 PM, CDT
The apt went well. My cycle have been messed up so we couldn't figure out exactly how far I was but we guessed and the EDD will be on JAN 14th 2006. She said I went back to being retro-flexed but that's normal, but now it will take a few extra weeks to hear the heartbeat. She said my cervix looks great considering its only been 10 months. I'll have an ultrasound done on June 8th.

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THURSDAY, MAY 19, 2005 10:29 PM, CDT
Did anyone get horrible cramps during pregnancy on baby # 2+? I've been getting these horrible cramps to where i feel like I'm in early labor, and I can't move till I breath through them. My midwife isn't concerned at all. She said its normal. as long as there's no spotting. But I never had any cramp with Nick till after my water broke.
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THURSDAY, JUNE 16, 2005 12:43 AM, CDT
hey every thing is just fine!! we had an ultrasound last week, baby is doing great. I haven't had any back pains lately, My new EDD is Jan 11th 2006! (could it be a new years baby???)

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TUESDAY, AUGUST 09, 2005 07:29 PM, CDT
At 18 weeks I went in for a routine apt. Patty my midwife decided to pull out the u/s machine to see if we could see the gender. She turned it on and turned white. She couldn't really see the baby because the placenta is really low. She had me go in for a professional U/S during which the technician was very quite, didn't point out any baby parts, kept having me turn and move lots of times. It took 2x as long as it normally would. I knew something was wrong, and was ticked off that he didn't say anything.

This afternoon got a call saying we need to come in right away to speak with the DR. and they demanded I bring Andy with (who finally was able to get a job was out of town working in a asphalt pit with no phone #). I kept asking Karie what was wrong and why couldn't she just tell me on the phone. I also told her I didn't think I could get ahold of Andy. She said I had too. So I eventually got a hold of him and made an apt for 9am. I was so scarred I thought the baby was dead or something is seriously wrong with it. I spent the day out at the farm to try to stop worrying, I also thought to myself its OK it could be twins or something like that. Anyways Andy got home really late and told me not to worry and that he was planning on chewing Patty out for making him come home from work for nothing and if he got fired it would be all her fault.

3/20/06 I remember freaking out just bad I was in tears, I could hardly pay attention to Nick, I didn't know what to think. I was so upset that they refused to tell me anything over the phone, In my heart I knew it was bad. It was so hard for me to find Andy he just started working so I didn't have his # I didn't even really know where he worked. I went to my sister-in-laws job and asked her for help, she did everything she could do to get a hold of him, they ended up sending a foreman out to the site where he was working 10miles out of town. I remember my SIL telling me it was all OK and just nothing. I was determined to drive to where Andy was a circle the area till I found him, I needed him so bad!! My FIL at the farm insisted I stay there till we got ahold of Andy, he wouldn't let me leave!! It took 4 hours for Andy to get the message and get back to me. to get ahold of him

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What dose a panic attack feel like? I think I lost Kassandra's 1st 2 U/S pictures. They are not with the rest of her stuff I've looked everywhere!! Where did I put them, usually I'm so anal about all her stuff. My chest feels tight, my head, stomach and c-section site hurt, and my heart is rapidly beating. I need to relax. I tried laying down but that makes me think too much, I've told myself to relax at least 50 times. I think I just need to type or something. I just can't find them, I know they are here somewhere and I miss placed them but how could I? To me its like misplacing my baby!! I can't believe myself. I feel like a bad mother. I wanted to post them here with my journal, I want it complete.

I'm so sorry honey!!

Lord please help me find these.

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WEDNESDAY, AUGUST 10, 2005 05:50 PM, CDT
at 9am we went in and was told that the baby has a lg cystic hygroma on the back of its head/neck, the heart doesn't have all 4 chambers and is laying sideways in the chest cavities, the baby has very little fluid around it, and it also is small and the some problems in the intestine area. it has very high chances of down syndrome

I'm devastated how could this happen. the hospital can't really tell us much so we have to drive 5hrs to a specialist in Minneapolis next week. I don't know what to do or how to feel. I'm to the point that I can feel the baby move and kick. Andy and I both just started new jobs and are trying to get back on our feet. My Dr. tells me it doesn't look good and that if we didn't terminate the pregnancy it most likely won't live but then she said that she really shouldn't say anything until the specialist sees it. How could I do that to my baby but also how could I make it suffer. We are devastated our world is crashing down on us. We don't know what to think or do. Why dose this have to happen to us, how are we going to tell everyone. Its so hard to even play with Nick because he keeps kissing my belly and saying "baby, baby"

3/10/06
God it was afull the night before our appt we were up all night and didn't get a wink of sleep. Nick spent the night at grandmas house so me and Andy could talk. He keep telling me it was ok but I knew it wasn't. I kept praying that they made a mistake or it was a multiple birth. In the morning we went in to see Patty. She walk in the room with a sad look on her face, Andy said how bad is it, she said the worst. I started to silently cry. She explain what they thought was wrong with our baby. Andy asked well what do we do then? She said most people terminate the pregnancy at this point, I freaked out and started to bawl, I said NO, NO. She said it would save alot of anugish and heart ack on our part. I though they were wrong and that it was a mistake. After that she said she could no longer provide care for me there so she made a refural to the cities to see a perinatologest and a gentic councler. She said they should call us back that day to arrange an appt. She left us alone to cry. All I rember is hearing a newborn baby crying in the backround, how awfull of a thing to do to us. I decided I needed Nick. We left the office in tears.

On the way home I decided not to pick Nick up just yet, I needed time to think of what I'm going to say to my parents who had no idea anything was wrong with the baby. I then called Andys step mom(who works at the phone company) to tell her to put call waiting on our line ASAP she asked why and I said the baby is messed up and I'm waiting for some phone calls. Andy and I talked a bit and the he went to pick up Nick. After that alot of things were a blur. I remember waiting for the call we never recived till the next day, I think I went to the libray to look it up on the internet. I kept thinking at any moment she'd die and I never know it. I think I called my sister the next day and sobbed forever on the phone. I asked her if she could call our family and tell them for me. I couldn't handle that at this point.

Andys stepmom and dad called to check up on us and I told them. They thought it would be better if we terminated the pregnancy. They never accually told us that but I knew by the way they talked. I decided I'd tell the rest of their family myself because they tend to get the facts messed up and I didn't want any rumors floating around. I told his sister Wendy first. She said she'd stand by us no matter what we did. I asked what we should tell Andys sister's Karens Kids(who passed away from cancer 2yrs earlier) she said she didn't know and it was up to me. I said lets wait till we know more. I called the rest of them but don't really remember what was said. At this point I decide not to tell Andys mom yet. She has bipolar and severe depression, she also is a sympthy hoor and would always make things sound 10x worse than they were. I didn't need her telling the whole world we were getting an aborton right away. I also didn't need her adding extra stress by playing mind games again on Andy durring this time. I had my midwife call my employers to let them know what was going on so I didn't have to explain why I wasn't comming to work for a few days.

For the next week I layed in bed and prayed every hour, Lord please save my baby let it be alright. Don't take it now. I surfed the web to see what I could find out, all I found were negitivites. Andy and I talked about it all the time, I before all this was totally against abortion (unless rape was involved) We seriously considered it many times, but it hurt so bad to even think about it. I asked Andy what he wanted to do, he kept saying it was up to me. That totally frustrated me. I finally came to the conclusion that he thought terminating the pregnancy would be better for me emotionally, and he has always went with what was best for me. Still he insisted it was up to me. I was unsure.

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FRIDAY, AUGUST 12, 2005 09:21 PM, CDT
Thanks for all the prayers, thoughts, and support. We apperciate it and have to keep going strong for Nick's sake. We have an appt. on Tuesday the 16th to see the genitic counselor and also to have a amniocentesis

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MONDAY, AUGUST 15, 2005 06:06 PM, CDT
We are soon on our way out to travel 5hrs to Minnapollis to see the specialists. At 10:30 tommorrow AM we will meet with the gentic counselor and then @ 12:30 PM to have the amniocentesis done. I hope all goes well and we can get the results really soon. It have been awaful just waiting for the appt to come up and now we have to wait a week for the results. We haven't made any desions yet and we are not planning on it utill we know all of the options, risks, proviblities and severties. Although we have disscused many "what if's" we don't think its fair to make any decions untill all of the above are known. We also have many queastions to ask and hopefully they can answer most of them for us. Thanks for the support. And I promise to keep everyone updated.

By the way, if anyone is wondering Nick is doing great!! He is a happy healthy and very energetic little boy. Nick walks, has gotten 4 teeth (and lives brushing them) and can say quite a few words, and will eat most any foods. He is also very loving and loves to pass out hugs and kisses to those he knows and will smile at those he dosn't know.
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SATURDAY, AUGUST 20, 2005 08:00 PM, CDT
Katie wanted me to update you all since she doesn't have internet access right now and has been too busy to make it to the library before they closed. She bought a beautiful pink bear ballerina blanket for her GIRL!

They went to the hospital at the University of Minnesota on Tuesday to see a genetic counselor and have an amniocentesis. They also have a high-tech ultrasound machine that was able to give them better news than her local clinic did. They found that the cystic hygroma isn't the largest one they've seen and the specialists were not concerned about it or the intestines at this time. Her amniotic fluid level is up, but the baby is still small. Good news---the baby does not have Down's or Turner's Syndrome, Trisomy 13 or 18 or any other chromosomal disorder that they tested for. They are sending a sample to Baltimore to test for another rare genetic disease though. They also found that the baby's heart is not sideways or missing a chamber like the ultrasound tech at her local clinic thought! However, the heart is still in very delicate condition. It's very enlarged and takes up about 2/3 of the baby's chest cavity. Katie will be going back to the cardiologist in 6 weeks to check on the baby's condition and make a birth plan. She will have to deliver in Minneapolis, which is 5 hours away. They did give her a 25% chance of going full-term, but they will not give any more percentages at this time. She will need to go into the local clinic to check the heartbeat before going down for her appointments. They did tell her that she can continue her prenatal care with her midwife, which she's thankful for. Please continue to send her PT&P as they have a long road ahead of them.
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3/10/06

The trip to the cities was nerve wrecking. We got there early to make sure we didn't miss the appt. I kept wondering what was wrong with all the other ladiesbabies there, some of the mothers looked so happy but yet a few looked terrified like me. They were very nice and explaind everything to us. I didn't look good at all. They were accually surprised to see that I still was pregnant, they expected me to misscarry. We choose to have an amnio done, we wanted to know what we were up against. The aminio didn't hurt as bad as I thought it would, I was terrified they'd poke and hurt the baby Even though I was praying to go the week before that the baby would make it, I secreetly wanted to misscarry that day due to the amnio. I just didn't want to have to make the decision if we should terminate the pregnancy. I wanted her to live but I didn't want her to suffer. I was still lost. The Dr.s were really grim, they didn't give us the percentage till we begged! I refused to leave the office tell they gave us one. At first 25% to term sounded really small but then I reallised it was alot bigger than we first thought. I asked the Dr. if the baby was in pain right now, she said no. This was a relief to us and helped us with our desion. At that point we still hadn't deciede what to do but the odds were going closer in her favor. At this point I prayed that she'd make it 20weeks so that she wouldn't be a misscarrage that it would be a still born and we could at least see and hold her.

It was a long two days to get the FISH studdies back, When they called and said it wasn't trisomy 13 or 18 we were so happy!! I then asked the genetic councler what it was, she said she didn't know yet, here she mis understood and thought I ment a diognosis, I ment the sex of the baby. It was a girl!!!!!!!!!! This really brightend our day, a daughter would be wonderfull!! Then we had to wait a week for more tests to come back. We wanted everything to come back negitive but if it had to be something we wanted it to be turners syndrom, (children have a much better chance of living and semi normal life with this chromosonal defect) We were happy to find out that there was absolutly no chromosonal defects!!! This made our day again!! This helped a bit more on our desion. I don't know exactly when we decided no to terminate but I did know we were making the right desion.

Now I look back at it all and feel horrible for even considering terminating my little girl, what if I would have. Would I have done it if there were chromosonal problems? I can't belive I even considered it. What an awful mother I was.

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THURSDAY, AUGUST 25, 2005 01:57 PM, CDT
well... here goes,

I got a call yeasterday from the specialists. They said the rest of the results came back from the amniocentesis. They all came back normal!! Great news for us. They have no idea what is causing the birth defects and if it could happen again. They set up an appt to see them again on the 30th. And instruted me to see my local DR. every 2 weeks starting today.

Last night I had to work and I started getting those braxton hics contractions but they were alot stronger than ussual. I went to see Patty (my midwife). My vitals are good but I'm still not gaining much wt. we went to listen for the heart beat and thought we heard it but then realised it was mine we were hearing, because I could feel it everytime ti would beat. We couldn't hear hers at all. I hadn't felt her all morning and at that point patty and I both thought se was gone. Andy wasn't there because he had to work. I lost it again and started crying. We did an U/S and my little girl's heart is very tired. It would beat 3 times and then skip a beat. She's moving but slowly and it is becoming very diffficult to feel her move. We don't think she's going to make it through the weekend. I'm at 20 1/2 weeks. I'm unable to work at the Nursing home but I'm not on bedrest. The's nothing we can do to help her but pray. So please pray for her. We are naming her Kassandra Karen Hedlund

3/11/06

I really blamed it on work, I'm still pissed off at the person who called in that night and the one that no showed. I still to this day get really pissed off when I see them and when I did work I refused to work with them. I work at the nursing home and we were so short staffed that night we ran our butts off. That weekend I didn't get out of bed except to eat and pee, I wanted to feel ever last movement I could. I prayed consenty to let her live let me have her longer, I wasn't ready to loose her just yet.

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MONDAY, AUGUST 29, 2005 11:08 AM, CDT
I'd like to thank you all again for the thoughts and prayers. Kassandra made it threw the weekend. She was very active!! I saw my midwife today and listed to the heart beat. at first it was irreagular but wasn't skipping any beats, the all of a sudden it started to beat perfect!!!!! I've lost 1/2 lbs since thurs and may possible have a UI. my BP was down again but we are working on that and it will be monitored closely. Other than that i'm doing Ok. I will soon get to go back to work but only 12hrs week(enough to keep my insurance) I see the midwife in 2 weeks and will have A U/S and see the cardio DR. in a month. They did tell me that before I leave for the cities I have to have an U/S to make sure she's still alive

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FRIDAY, SEPTEMBER 09, 2005 02:03 AM, CDT
Ohh My, she's quite the acrobat. She's been so busy I decided to stay up and feel her dance. Its great to know thats she's still fighting and we can enjoy her little kicks and dances. She's our little ballerina.

Phyically I'm feeling better. I think I may have gained 1lb . Andy is out of a job now so things are really tight, but he's looking for a new one. I see the midwife next Monday and again on the 26th. I have another U/S on the 28th and on the 30th we go to the cities and see Kassandra's cardiologist.

I'm not sure but I think my Midwife has givin up hope. She dosen't act very enthoused when I come in and dosn't ask me the normal questions like how's you eating are you taking your prenatals don't forget to drink your water. Instead she's quiet, withdrawn and dosn't even think I need to take it easy. there is really no other choices of dr. around here only 2, 1 I can't stand and the other is over booked. My genitic counsular thinks the midwife is just trying to prepare me for the worst outcome. I on the otherhand would feel more conforted if I knew that we did everything possible to make it eaiser for her in what little time we may have her. I asked if being on bed rest would make any differnce. They said No it wouldn't, I felt this was wrong. I know in most IUGR babys they make the mothers be on bedrest. So I try to be really carefull on what I do. Andy and I also decided thatwe would put ourselves on pelvic rest since my placenta is really low, and we think it might give her a better chance to live and grow. And I certinly want to spend as much time feeling her now. And I also would like to pray and hope that she makes it and do everything possible for her, I want her treated the same as we'd treat Nick. I want her baptised and called by name. and on my next appt I'm going to tell her that.
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MONDAY, SEPTEMBER 12, 2005 12:51 PM, CDT
Hi,

I just got back from my MW office. I gained 1/2lb, grew 1/4cm, in 2 weeks. My BP was 104/72 which is much better than it has been. I'm measuring 3 weeks small. The office was unusally busy today so it was a very short visit. Kassandra's heart beat was strong and perfect!! . But she is sitting very low. I had every intention to chew out my midwife for her bad attitude at my last appt but she was very sweet and hopefull for Kassandra. She even asked me if we picked a name and if I was taking my vitimins. I'll see her in 2 weeks. Thats also the same week as my U/S and when we go to the Kassandra's caridologest.

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MONDAY, SEPTEMBER 26, 2005 01:09 PM, CDT
My appt this week went very well. We grew!! Bump wise I'm only 2 weeks small!! I hope she's finnally catching up. On Wed morning I'll have another U/S. My BP was excatily the same as last time. And every thing else was good. Cassandra's heartbeat was so perfect!! Thanks so much for all the prayers. I belive thier being answered. Please continue to pray on Friday morining we have our appt with her caridiologest in the cities. My next OB appt is 10-10 @ 10am

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SATURDAY, OCTOBER 01, 2005 06:43 PM, CDT
just have to say that I glad we're home. Due to financaial reasons Andy and I were going to get up at 2am and drive 5hrs to our appt. But Thanks to my dad he insisted we stay down there the night before my appt. The hosp has a hotel like acommidation rooms availiblible for only $60 and Dad set it up and Paid for it. (THANKS DAD) Thursday when we were ready to leave my paycheck hadn't arrived yet so DH went to get pd for selling a old car we had and the guy who writes the checks was gone and wouldn't get back untill late in the eveing, so we were stuck again, but dad saved us again and borrowed us enough $ for gas and food for the trip. We were running 4hrs late but were on our way thurs night. On the way there we got pulled over for the headlight not workingon the car then 10 min later as we were pulling into a gas station to see if they had on we got pulled overagain.

I don't know what it is about MEN and refusing to turn around when they miss a turn. But DH got us lost then refused to stop and ask directions. HE eventually found the way after many wrong turns and driving many miles out of the way.
Our room was very nice and comfy, we didn't sleep that well though, worring about the appt and missing Nick.

The appt didn't go well. They were behind scheadual and changed our room so we could have the "best" U/S they had. well the darn thing kept shutting off and rebooting. So they ended up changing rooms again. Cassandra is 1lb 1oz (small for her gestational age) she's measuring 3 weeks small. Heartbeat was ok. The Cardiologest want us to go back in 1 month again, she' still too small to make a proper dionosis. He did say that(guessing) one side of the hear was too small and the other side was much too large, and this could be with the valves too. With out a diognsis he couldn't tell us any options, procedures, possible outcomes. He was conserned about not having any room for the lungs to grow. He did say that no matter what she'd be very ill and would go straight to the ICU neonal unit, if she makes it to full term. But he also said that we had to talk to the perinatologest for the rest of her problems. So we seen him. He confermed what the caridio said but said that Cassandra has so many problems(heart, brain-dandywalker,cystic hygloma, ecobowel?,fetal growth retardation) that it didn't even look like she'd even make it to the NICU. They taped the u/s and are going to review it and will send us more results to my Dr here. I asked if we could recive a copy of the u/s they said no Sad He want to see us in 3 weeks. I couln't afford it so we are putting it off 1 extra week so it would coinside with our other appt down there. I don't know how much longer I can afford to go down there. Its bad enough to keep up with my insurance, rent and utilities. We are now just paying the nesessity bills. I miss working as much as I used to but I enjoy the time I get to spend with Nick and feeling Kassandra move and knowing that I'm doing everything to try to save her or at least make it eaiser on her. I hope Andy finds a good paying job soon. These odd jobs aren't cutting it.

The perinatologest ticked me off because last time we went down there they gave us the options which included terminating before 24weeks(MN STATE LAW) we declinded. So this time they told us that we could do it in Kansas. Can you belive that. We said NO a month ago and then even though it was illegal for them to do it they were trying to refer us to another state where it was legal.

My appts this month are on the 10 and 24th I also might have another u/s on the 26 at my reg clinic, then on the 28th in the cities

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-TUESDAY, OCTOBER 18, 2005 12:21 AM, CDT
Would everyone send me a hug please. I have lots on my mind but I try to type it out and just can't. I've tried so many times to express my real feelings but I can't. Andy says I worry too much, but how can I not worry. I try to keep busy but I can't.
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TUESDAY, OCTOBER 18, 2005 12:28 PM, CDT
My midwife told me that my plevic bone is seperating. Has any of you heard of this? It it really painfull. I've been having a rough time getting through the day. Its so hard to go anywhere with Nick because he needs to be carried alot of the time or he runs away from me and it's almost impossible to run after him. I think I'm begining to walk differnt because of this.
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TUESDAY, OCTOBER 25, 2005 07:05 PM, CDT
I passed my 1hr test!!! Nothing much has changed since my last appt. My pelvis is still seperating. My wt and bp are fine. Cassandra's heat beat is normal! She has now moved head down. This Fri we were supposed to go to the cities and see the specialist again but we have to postpone it for two weeks because our paycheck was too small and we have to pay the rent 1st. Andy also has to work because some guy was having surgery that same day and Andy can't take that day off. We resceadualed the appt for Nov. 9th. I see my midwife again on the 7th

After we came home from that appt in the cites we started tellin or friends, rest of the family, my church congregation and co workers. I was open in hopes that if she did pass away people wouldn't be surprised. I also wanted to get as many prayers as I could. The Power of prayer is great. Without that I belive we would have never been able to spend those 5 days with Kassandra. Anyways with everything going on we somehow forgot to tell Andys mom what was wrong. We had plans to tell her after that appt. but beings she really hadnt been appart of our lives at that time we forgot. Her sister heard it from Andys Stepmom at work and told her about it. She freaked out. I wished she would have called me sober, but she was totally drunk. She called me up yelling and screaming about it. She kept saying "oh pitty me I'm the grandma fror gods sake. Now my heads is crawling again." I said you know what I'm the mother!! And its my child!! Its your fault your not appart of our lives otherwise we wouldn't forgot to tell you. I totally understand why she was upset but she didn't have to yell at me. She kept repeeting herself saying "i'm the grandma, and what not. I kept telling her what happened but she couldn't understand me. I finally said thats the way the cookie crumbles, get over it. The next day her other sister called me up and yelled at me also saying its all my fault and I pouposly didn't tell her just to get back at her for what she did to Andy his whole life. At this point I was in tears. The next time I talked to his mom she didn't remember a thing that she said to me. I talk to her once in awhile but to this day I still am upset by some of the really mean things they said to be, that I didn't feel it was approperiate to write in this fourm.

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SUNDAY, OCTOBER 30, 2005 01:57 PM, CST
I've the having this funning feeling in my legs and feet. Its hard to say what it feels like. Kindoff numb but not tingely and is very bothersome but not real painfull. Mainly uncomfortable and anoying. Putting them up and massaging them is not helping. It almost feels like growing pains but I havent grown in 9yrs. They are not retaining water or swollen. Any Ideas?
update Patty CNM says its restless leg syndrome

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TUESDAY, NOVEMBER 01, 2005 12:22 AM, CST
Kassandra made it to 30 weeks!!! Far past what the Doctors predicted!! I'm so proud of my little fighter! She's only got 10 weeks to go! She can keep proving them wrong. I can't wait to hold my liitle girl.

PUPPP Pruritic Urticated Papules and Plaques of Pregnancy has anyone has this? I Had it while pregnant with Nick. It was terrible! I itched so bad I couldn't even sleep durring the last trimeaster. My reserch says that it usually only occures in 1st pregnancies. Did any of you get it in future pregnancies? As I'm entering the 3rd trimeaster I'm scared that I'm getting it again. Today I started getting a itchy rash on my wrist. I hope its just spider bites or a reaction to soap I used at church today

2 days later

Well so far so good I itch a bit but the rash hasn't spread!!

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WEDNESDAY, NOVEMBER 09, 2005 12:21 AM, CST
Only 7hrs left till we leave for the cities. We'll have another U/S done and see Kassandra's pediactric caridologest. Also we will be meeting with a perinatologest. (AND IT BETTER NOT BE THE SAME ONE AS LAST TIME)
This time I'm more prepared and wrote my questions down on paper. Last time when we got there I couldn't remember 1/2 of them. We will hopefully be making a birthplan this time and I'm going to ask if we can get a tour of the hosp where she will be born and the NICU area so we know where to go and what to excpect. I hope they don't make us wait till Dec. to do it I'm getting anxiouse to plan. We are praying for good weather as we have a 5 hr drive there, and we don't plan on staying overnight so accually it'll end up being 10hrs in the car.
Well I'd better get going to sleep now, I'll update you all wed night,or thursday depending on how late it is when we get back.

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WEDNESDAY, NOVEMBER 09, 2005 11:27 AM, CST
Just to let you know. We made it back safely. I'll update you all on the appt tomorrow after I take Nick to mommy and me class, and the hosp will be calling me so I'll have to have the phone line open. So I hope I'll be on in the afternoon! Thanks for all the prayers

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Why dose it have to be this hard? Why do I wonder so much on what she'd look like and be today. As I was scanning through my parenting bourd I noticed a thread from my preggo buddy who had the same due date as me. Its so hard, I knew I shouldn't have opened it up. It was a picture of her beatiful little girl who just turned 2 months. She had such a big smile on her face. I just sat there starring at it wondering when Kassandras first smile whould have been and if she's smiling in heaven. I miss my little girl so much, I never knew it would be this hard.

I got a newsletter from SHARE today, I found a nice poem in it.

I dedicate it to sweet Kassandra, Love mommy

I WILL LOVE YOU.

As long as I can dream,
as long as I can think,
as long as I have a memory...
I will love you

As long as I have eyes to see,
and ears to hear,
and lips to speak...
I will love you

As long as I have a heart to feel,
a soul stirring within me,
an imagaination to hold you...
I will love you

As long as there is time,
as long as there is love,'
as long as I have a breath
to speak your name...
I will love you

Because I loved you
more than anything
in all the world.

By Daniel Haughian
I LOVE YOU KASSANDRA!!!!!!!!!! xoxoxoxoxoxoxoxoxox...

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THURSDAY, NOVEMBER 10, 2005 09:11 AM, CST
Hey we made it back from the cities. It was a long day.

The good news 1st

Durring the u/s the tecnition made many comments about how active she was!! And that she was so busy we had to wait a min to get some good pics. Kassandra's cystic hygroma on her neck is getting smaller and should disappear before she's born! There is no extra fluid around the heart or in the intestines, which are signs of distress, The placenta isn't low any more! There's plenty of Amniotic fluid and all is well with the umbilical cord. Kassandra's heart rate was strong and regular. Despite that we couldn't get her heart rate to increase while moving her with a massage, the brain has fair waves. But It is hard to tell this early.

The bad news

They confirmed that Kassandra dose have Dandy Walker Syndrome (brain issue), but they don't know how severe it will be until she's older. This is the dandy walker home page
http://www.geocities.com/Heartland/Hills/3919/dws.html
Also they confirmed the Ebstein's Anomaly (her heart problem)
http://www.childrenheartinstitute.or...ts/ebstein.htm is the link for more info
The pediatric Cardiologist did say it was looking better than they thought it would at this point in the pregnancy, it's not distressed yet, but still quite large, the heart is taking up 77% of chest cavity, it should only take about 25% they are unable to determine her lungs at this point. The lungs are a crucial point in her survival, they will be affected greatly due to the large heart. It is expected that when she's born she'll need assistance with her breathing, at least to start out with.

The really bad news

Kassandra is not growing well. My Bump is measuring 2 1/2 weeks small. Kassandra has always been 2-3 weeks small but now she's more than 1 month behind in growth and falling off the charts quickly. If after 35w she's not growing they plan to take her by c-section before the 37th week. The Doctors want to start seeing me 2 times per week now. Which is impossible because we live 5hr from there So currently we are trying to work out another plan to where I can go to a closer hospital to get monitored for this month. On Dec 4th I need to go back down there, and have to plan on staying there for the rest of the pregnancy.(6weeks EDD) And of course till they let me take her home

I'm very nervous about this. I won't be allowed to take Nick with. I get upset when I have to leave Nick for more than 2 days. There's no way Andy will be able to take off that much work, especially since he needs to save that time off for when she dose arrive.

But miracles happen every day so keep praying for my dear Kassandra!

Durring this time I was begining to have a little more hope for her. I made it to the 3rd trimeaster, she was such a fighter. I was finally starting to come to peace with god realising that it was not his intention to hurt or punish us, and that this was apart of his plan. I became very close to god. The pregancy was full of ups and down, I was so thankfull for ever day that I did get to feel her in my womb. I was spending alot of time on the birthdefects fourm and found so many wonderfull people that gave me much support and thier prayers. Through the board I meet Jamie Little. She was such an insperation to me. We talked quite a few times on messenger. I felt so close to her because we could relate on so many things, thoughts and fellings. I also was spending time on the dandywalker fourms, I learned that dandy waler wasn't as bad as I thought expecially if it wasn't severe. I didn't figure Kassandra's was because she had fair brainwaves in her head echo. I researched the Congential Heart Defect, Ebstines Anomally. I knew hers was seveer, I could not find any information on any new surgeries or treatment, it all depended on her size at birth and her lung development. I looked into John Hopkins hospital in Bosston and I tried so hard to get any hope from Dr.s there. I even looked into experilmental procedures. There was nothing to be found. I had no idea how'd I get there anyways finacially I was haveing a rough time making it to the cities. But I was determinded to do everthing I could!! I did find a study that involed an intureuterine MRI to study the baby better than an U/S or an echo would. I belived this would help the Dr. undersatand her condtion better so the'd be more prepaired when she was born. I however couldn't convince any Dr to do this. I begged him to read the artical I found. They said it wouldn't work because babies move so much inuterine and she had such a low viablitly standred anyways it wouldn't matter. I still disagreed. I tried contacting the Dr. that preformed it before but I never got a responce. I started eating a ton in hopes that Kassandra would grow big enough for her surgery, I even ate in the middle of the night. In my mind if Kassandra could have the surgury she'd live! I took the maximum of viatimins that I could safely take. I was willing to try anything at that point. I studied Cystic Hyglomas, I was happy to hear hers was getting smaller and there was no evidence of fetal hydrops!! Those ussally cause seveer and cause major brain damage and many deaths.

I even started convincing my self that she might be able to come home, I setup Nicks old bassinett and even bought a few premiee outfits and a small thing of diapers. I didn't go all out because we were told that we may never bring her home. I aslo knew that if she did make it she'd be in the NICU long enough for me to gather things up as I needed. I felt bad for not being more prepaired for her. I so badley wanted to have a room painted for her, buy her a crib, get tons of bottles and passifier and so many other baby items. I just couldn't do it because in my heart I knew I'd never bring her home. It was so hard when I started showing, people came up to me all the time asking when I'm due and what hospital I go to. It was so hard to explain to everyone what was wrong with her. They just didn't understand. One day a staff member where I worked asked me if I was excited because I was having another baby really soon, I tried to answer the queastions accordently without giving details on the birthdefects, but she kept asking queastions about what type of stuff did I buy for her so far. I walked out in tears. I think she was the only one at work who had no idea what was going on. Most of the time I was really open to everyone around me I let everyone know what was going on. A few times I just couldn't burst thier bubble because they looked so happy. I didn't want to be the one that depressed them that day. The hardest part of telling people was to tell my neices and nephews. Most of them were preteens. I exlained the heart problem but not the rest I didn't want to scare them too bad. I did however let them know there was a very good chance that she won't make it, I think this helped prepare them for when she did die.

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SATURDAY, NOVEMBER 12, 2005 10:52 PM, CST
We have our first round of appts set up for DEC 5th in the cities. We have 4 appts set up for that day. At that time we will also get to tour the NICU and meet her netalnatologest. I'm still waiting for the information about where I'll be staying since the acommindation center will be closed then. I'll keep you updated as we hear more.
GOOD NEWS I WILL GET LOTS MORE PIC'S OF MY LITTLE GIRL!!!!

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MONDAY, NOVEMBER 14, 2005 03:47 PM, CST
I had the biophysical U/S today. I meet with the teck who is very nice and he'll be there every week to do it. It only took a little over 1/2 hr. It didn't go very well. She was moving and heart rate was fine, but the main thing they were looking for was to see if she has started to "practice breathing" which she didn't. I'll get the final results w/an explanatin from the midwife soon. On Thursday I'll have a stress test. and depending on how she dose they told me it could take up to "hours". If that dosn't go well I might have to quit working. Hopefully no bed rest. Please send Kassandra "practice breathing vibes for next week" I do not want to have to leave for the cities before December.
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TUESDAY, NOVEMBER 15, 2005 10:10 PM, CST
I'm so ticked off and there's nothing I can do about it! I've finally got ahold of my superviser and put in my request for my 90 day MLOA.(starting Dec)
And it was DENIED. They knew when they hired me that I was pregnant. They have been great to deal with everything going on up to this point. This sucks majorly because it affects my health insurance.It is totally leagal for them to do this because I haven't worked there for 1yr yet. I will be allowed to keep my insurance but my preimums will go sky high(they tripled). I won't be able to change my policy, which means I can't add Kassandra to it when she's born. I'm working with Social Servises to get on a state plan. But they have income limits and that means that we will always have to stay in the low income guidlines. After she's born and I go back to work we could go over the limit and need differnt ins. but for her it will be hard because it will be a preexisting condition. The state will have to keep her on till she's 2.

The good news is that they will keep me on till I go to the cities. And she said that after I'm ready to come back to work she plans on giving me my job back.

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MONDAY, NOVEMBER 21, 2005 06:31 PM, CST
Well, I had another Biophysical today. The fluid and her movement look great! She still hasn't practiced breathing(that we saw). I kind of wonder if she dose it in the eveings? She's so busy in the PM. In the mornings she never really move around much anyways. But we'll try again next week. The U/S technition taught me how to do the U/S, and explained how to look for certin movements and how to measure the fluid. He even let me move that thing around and decide when to take her picture. It was kindof fun! He told me that next week he'll put me to more work and I can controll it durring the majority of the test! Boy my arms are going to be tired, sometimes you have to hold it in a certin spot for 5min to check for breathing. I tried posting the pic but my scanner won't work:(

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THURSDAY, NOVEMBER 24, 2005 11:13 PM, CST
I had my flu shot Wednesday (ouch) and also had my appt with my midwife. I didn't gain any weight this time but I expected that since I've been nausouse this week. My BP was fine, I was worried it was high because I had a head ack and light headedness all week. She figured maybe it has to do with stress. Kassandra's heartbeat was great! And I got my free diaperbag. I'll see her again on Monday.

After that appt I had my nonstress test. It didn't go well, The first hour was a waste of time because they didn't have it tight enough so it wasn't picking up any contrations. So I had to lay there another hour. After it was read they called my specialists in the cities for a consult. The test didn't show apropreate movement or whatever they expected to see. So they ordered another biophysical and said that if she dosn't score 6 of 8 points that I'd have to go to the cities that night. Kassandra passed! She got 6 pionts(thats what she has been getting.) She did surprise us and practised breathing!! but only did it for 5 sec and not the 30 sec to aquire the points for it. I have another biophysical sceaduled for monday. If she dosn't pass then they want me in the cities ASAP(a week earlier that expected). Which sucks because I'm still not ready and DH dosent get paid till Friday. Oh and they said "take it easy this weekend but be ready to go for your extended stay"

I did find a grant in my home town to help me pay for the food I'll need to eat durring my stay there. I also checked on the Ronald McDonald house but they said I can't stay there till she's born. We did get the paperwork started on it, hopefully we'll get on the waiting list. No thanks to my social worker but I did finally receive my state insurance(MA) on just as my employer insurance ended. She has been terribly slow and continually leaving the office early. Knowing there was a 4 day weekend and she hadn't contacted me yet I had to track her down after my appt cuz she left early again. Thank goodness we live in a small town, I found her in the ciropractors parking lot. She had just opened the MA case before she left.(It was supossed to be done a while ago) The good news is that MA will pay $50 a night towards my stay in the cities, so I'll have to only come up with $40(which is still alot when you look at 6 weeks as a possiblity) I'm also looking at hotels that are farther away but cheaper but I'll have to factor in transportation costs then.

My care conrdinator is going to contact me on monday with hopefully the fine details worked out. I not so sure I trust her though, she's only been in the office 3 days in the last 2 weeks and as last tuesday hadn't done a thing yet. I had to contact another cordinator to send my my package on information because she was on vaction and she forgot to send it before she left.

I'll let keep you all updated the best I can. When I'm gone I'll have Sarahdawn and Wendy keep you all updated. Thanks for being so supportive!
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SATURDAY, NOVEMBER 26, 2005 11:35 AM, CST
I just found out that the hospital accomidation center is not closing on the 1st as expected! They are staying open till the 14th. Which means for the first 10 days I'm at the cities I won't have to pay for my room! And I get to take Nick with me for those days!!(as long as they don't switch my status to bedrest) I haven't hear any updates on where I'll be for the remainder of the pregnacy but I hope on Monday it will all be set. I can't belive my cordinator came to work on a Saturday out more details!

We are all doing fine at the moment, I had a nice day yeasterday with DH home and he did Nick duty and pampered me most of the day. He even cleaned out the closets for me and helped with my to do list.
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THURSDAY, DECEMBER 01, 2005 04:23 PM, CST
We had another non stress test toay and Kassandra did great!! The very beging of the test was scarry because her heart was irregular and skipped a few beats(which hasn't happend since around the 20th week) but after a few min of praying it was a perfect beat, and for the first time ever it accelerated durring stimulization! They were surprised to see her move more than she usally dose. She did alot better then previouse tests, but they are still conserned. I'm so glad she's improving.

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WEDNESDAY, DECEMBER 07, 2005 11:17 PM, CST
Well I'm all settled in now. Life is pritty boring here, not much to do. DH and DS are still here but are leaving before the weekend. I wish they could stay longer, I'm sure going to miss them. The room is fine, and they deliver my meals to me They have internet access here but there is limited time and usally a waiting list.

Monday was a exausting day with all the appts. My U/S went well Kassandra is 2lbs 14oz! She's doing well. Since we got here she's been more active. I'm a little upset with the way they run things here, we see a differnt perinatologest every appt and becuse they all have their opinions on what's best for her we can't right a birthplan. Right now they are argueing about weather to induce at 37 weeks or await labor. Hopefully I'll get an answer by Monday. We got lost taking Nick to the babysitter so DH didn't get to go to any of the appts, he really felt left out.

I also got to tour the NICU. I meet with the netalnatologist. He say's when she's born they will probolly intebate here and put lines in her umblical cord area, before taking her to the NICU. Although it dosn't look promising on long term outcome he did say that he was figuring that she would make it long enough to go to the NICU. The peri's last time made it sound as if she wouldn't make it that far. He also said that he dosn't think she'll need to be in an isolete and most likely just be under a warmer. But again this is just one DR. opinion.

Today I went to group. It's like a support system that gets together once a week. Although none have baby's with birth defects they are also a long ways from home and are having comlications with their pregnacies. (quad's, bed rest, membrains ruptured at 20 weeks, ect.)

Tomorrow I'll begin my biophysicals and nonstess tests again.
___________________________________________________________
Well I have to go to bed now
-SATURDAY, DECEMBER 10, 2005 11:51 PM, CST
my poor baby! I don't have much time so I'll try make this really short. Andy went home and I got to keep Nick with me! Poor Nick fell off the bed and bit his tounge so bad that the tip split in two. I had to take him to childerns hosp which is 15min walk from our room. Since he was bleeding all over I took him to the reg hosp ER which is closer but they wouldn't open the door because his was a child! I WAS PISSED.So we had to back track 5min walk. We were in the ER 4hrs the doctors decided not to do anything till morning because Nick had just ate and had to be put to sleep for the stitches. He got admitted to the hosp and didn't have a good night. They put tried 3x's before they could get the IV in correcty. I think we got maybe 45min of sleep. The Next morning the surgery went well it took 10 min and then 10 min for him to wake up after wards. The scarrest part was when they put him to sleep while I was holding him he fell asleep almost instantly as the med's went in. I started bawling. After a bit they took his IV out so we could be discharged. While doing this the nurse cut Nicks finger really bad. They sent us to the ER again. Nick ended up getting 5 stitches in his little finger. After that we got the heck out of there. That nite Nick pulled the badage off and a stitch fell out so we went back to the ER. Nick doing fine now eating and drinking well!
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Hi all!! Hope all is well! Last night the perinatologest was going over my stess test that took the day before. She called and wanted me to come in and do it again as well as a biophysical. The stress test went ok, it wasn't that great compared to a healthy baby but was much better than her usually ones!! The biophysical went great!! She passed it!! scored 8/8 wich she has never done before!! She was beathing qiute abit this is a great sign, it means that her lungs are developing! My next appts are on Monday
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FRIDAY, DECEMBER 16, 2005 06:59 PM, CST
Dear Kassandra,
It isn't quite time for you to come out yet so PLEASE move off my pelvic bone, so mommy can rest! You may kick me in the ribs all you want!! That felt better than this..

(by the way) I think she's dropped, I hope she dosn't come this weekend Andy came and got me and brought me home for a few days! I'm so happy to be home but very scared of going into labor. This may be the last time to be home before she comes, I might not be able to be home for X-mas, it all depends on the current DR. appt and how she's doing. I was told to take it easy and no lifting. It's not easy when thats all Nick wants me to do.

I'll go back to the cities on Sunday. Dad might be taking me there. I'll have to say goodbye to Nick because it getting to hard to care for him there and he'll need to stay here with Andy. I'll miss them!

I'm going to be staying with my aunt that lives an hour away from the hospital, I have no choice I really can't afford to stay in a hotel. OB home care will be comming out there 2x a week for my NST and Biophysical. The medivan will pick me up once a week to bring me to see the specialist. It'll be pritty boring there as theres not much that I can do. My aunt works long days so I'll be alone most of the time. Hopefully I won't go into labor when she's gone. The Nice part is that it'll just be me and Kassandra time togeather, no distractions.

3/12/06
I missed Andy and Nick so much durring that time it was so hard not knowing what was going to hapen and when it would happen. I was terrified something bad would happen to Nick while I was gone. But In a way It was a blessing, I got plenty of time to talk to Kassandra and bond with her even more. I'll never forget that. I read to her and sang to her, I felt like she was talking to me. It was so sweet. She really reacted to Jeasus loves me. I think that would have been her faverate song. It really sucked being down in the cities knowing that my sister Sarah came home for Xmas. I missed her so much, and she finally came back from Washington, then I had to leave. So there we were back to talking on the phone again, LOL

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THURSDAY, DECEMBER 22, 2005 12:33 PM, CST
Last weekend I got to go home for a short visit. It was a nice weekend, I finally got to meet my nephew Tristan(he's a cutie).We tried to leave for the cities Sun night but the car was overheating so we had to turn around and take the van in the morning. Everything went fin untill we were 1/2 there then the van started shaking really bad. we had to pull over numerose times. DH was able to fix it eventually. We barely made it to the appts, they went very well, and we got permission from the Dr. to go home for X-mas! DH went home to take care of Nick. I Miss Nick so much this is the longest I've been away from him.
Today OB Homecare came to where I'm staying and did another BPP/NST. It didn't go well, it took a long time for her to do her breathing.But she did get the points in the last min of the test. The NST looked awful compaired to last time. Her heart really wasn't accelerating like it should, the lines were pretty much strait.

___--_____----_________---_______
Thats kindof what a 10min block of the strip looked like. They called the DR and it's been decided that we'll retest tomorrow. They asked me if I was followwing the bedrest rules. BED REST RULES? They Never told me I was on bed rest! I asked around 24weeks and the dr then said it wouldn't make a differnce, I've also been told to take it easy but never bedrest. The nurse reread the chart and said that I've been on it for ahwile. Now I'm pissed because I always knew IUGR babies had a better chance if the mother was on bed rest but was told it was due to the heart and not the placenta. I'm sick of the large group pratices! I see a differnt peri Dr every week they all have differnt opinions and can't keep their facts strait.They are supposed to be specialists for God's sake! I'm so worried and upset. I'm now on strict bedrest and may not get to go home now, with the possiblity of hospitalization. I'll find out tomorrow. The DR on Monday said we are going to wait for me to go into labor on my own and plan on having a vaginal birth, now this Dr thinks wee might have to take her soon vi C-Section. Well I g2g laydown, I just figuered I'd update quick.
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FRIDAY, DECEMBER 23, 2005 10:44 PM, CST
Kassandra isn't feeling well today, there has been a decrease in fetal activity and also in BPP points. I will not be going home for Xmas I need to stay close to the hospital. My family are comming here for Xmas! OB is comming here again in the morning and are going to retest again. Hopefully Kassandra will do better. If not I may have to go stay in the hospital. If her conditon worsens she will need to be deliverd soon. We may have a Christmas Baby. Please pray for her, even though she's considered full term it would be better is she was able to stay put so she could gain weight(she's way behind) and her lungs could mature more. At the condition she's in she would need to be intubated at birth and also (if needed) it would be harder to do surgery right away due to her size. Every day counts! Although if she's getting stressed in there it would be better if she was born she might not be handeling it in there well due to lack of space. I have only gained about 9lbs. Please send prayers for her!!!
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SATURDAY, DECEMBER 24, 2005 10:53 AM, CST

The tests are still the same, I'm going to the hospital now. Wish us luck, hopefully Andy will make it here before delivery. Hopefully they will just have to monitor and not deliver her today, oh well she'll make a great X-mas present!

3/12/06

Durring this time I was so scared and alone, I cried and prayed alot. I told Kassandra to keep fighting and that we were almost there. She made it to 37 1/2 weeks which was great. FULL TERM. She kept proving the Dr.s wrong and I hoped she'd continue to prove them wrong. I prayed so hard I told god that if he needed to take her home, at least let Andy and I hold her while she was alive, even if it was only a few min. I also hoped my family would be able to meet her as well. I was bargining as well I told got that he could take me durring the delivery as long as he let her live, maybe she could have had my heart or a peice of my lungs. I so would die for her. I know it was wrong but I prayed that there would be another baby that could donate his/her organs to Kassandra that day. I would have done anything or give anything just to give her a better chance at life. I was so worried that she'd die before I got to the c-section room. We had to drive an hour just to get to the hospital and I was worried about something happing along the way. I was worried about Andy not making it there in time. I hoped that they'd just admit me and Kassandra would be fine and I would just have to stay there to be monitored till she was ready to come out. I knew she wasn't 4 lbs yet, I didn't figure she had made it to 3. I knew in order for a surgury she had to be 4lbs. I prayed some more.

I still to this day feel guilty about Kassandra being so small. I was always so ill at the begining and puked alot, I also had no appitite. I thought maybey it was all in my head and my fault she was so small. If I would have ate more early on maybe she would have had a chance. Also the month we found out about her problems I was so depressed I didn't take very good care of myself, I didn't eat much. We didn't have much money at the time so I cut down on my food intake a bit so I could feed Nick and have money for diapers and still go to the cities to find out what was wrong, I never knew it would affect her growth. I never starved myself and took extra vitamins. I asked the Dr.s if this could have affected her growth but they said it was probolly due to her heart defect. I still think they were just lying to save me from my guilt.

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3/13/06 6:28am
Dear Kassandra,
Good morning dear angel,
Did you see me last night?
I saw you in my dreams so sweet and petite,
I dreamt you were walking along side of a cloud,
And I was there with you holding your hand from above,
You looked as though you were about 5 yrs old
You had blond hair and the bluest eyes I ever saw.
This gave me hope that I would one day I'll see you again.
I can't wait till that day will come.
I can only imagine how I will feel
When I can cradle you once again in my arms.
I think I will sleep with your pink blanket more often
For then maybe we can be together every night.
Now Mommy has to tend to your big brother,
So why don't you go play in the sunshine and clouds
For tonight when you slumber, I'll see you again

Kassandra do you like what I wrote?
I wrote it for you, For I thought of you all night long.
I wonder if its true that I'll see you again,
the lord only know when my dreams will come true.
I can't wait to see you again my darling angel,
I wonder will you have blond hair and blue eyes like in my dream?
I think that is weired, that's what I saw, because remember dear Kassandra,
Your were born with brown hair and dark eyes,
Did my eyes deceive me?
Maybe it was meant to be.
For your Brother Nicholas's hair has turned blond.
I'm not going to wonder anymore,
for tonight I will find out for sure.

LOVE MOMMY!!!

This is what I'm feeling. I found this on the MISS Foundation boards last night.

[b] MY WISH LIST

1. I wish my child hadn't died. I wish I had h/her back.

2. I wish you wouldn't be afraid to speak my child's name. My child
lived and was very important to me. I need to hear that h/she was
important to you also.

3. If I cry and get emotional when you talk about my child I wish you
knew that it isn't because you have hurt me. It makes me feel
worth wild to know you remember and you care!. My child's death
is the cause of my tears. You have talked about my child, and you
have allowed me to share my grief. I thank you for both.

4. I wish you wouldn't "KILL" my child again by removing h/her pictures,
artwork, or other remembrances from your home.

5. Being a bereaved parent is not contagious, so I wish you wouldn't shy
away from me. I need you now more than ever.

6. I need diversions, so I do want to hear about you, but, I also want
you to hear about me. I might be sad and I might cry, but I wish you
would let me talk about my child, my favorite topic of the day.

7. I know that you think of and pray for me often. I also know that my
child's death pain's you, too. I wish you would let me know those
things through a phone call, a card or note, or a real big hug.

8. I wish you wouldn't expect my grief to be over in six months. These
first months are traumatic for me, but I wish you could understand that
my grief will never be over. I will suffer the death of my child until the
day I die.

9. I am working very hard in my healing process, but I wish you could
understand that I will never fully recover. I will always miss my child,
and I will always grieve that h/she is dead.

10. I wish you wouldn't expect me "NOT TO THINK ABOUT IT" or to "BE
HAPPY". Neither will happen for a very long time, so don't frustrate
yourself.

11. I don't want to have a "PITY PARTY" but I do wish you would let me
grieve. I must hurt before I can heal.

12. I wish you understood how my life has been shattered. I know it
is miserable for you to be around me when I am feeling this way.
Please be patient with me as I am with you.

13. When I say "I'm doing okay", I wish you could understand that I
I don't "FEEL" okay and that I struggle daily.

14. I wish you knew that all of the grief reactions I'm having are very
normal. Depression, anger, hopelessness and overwhelming
sadness are all to be expected. So please excuse me when I'm
quiet and withdrawn or irritable and cranky.

15. Your advise to "take one day at a time" is excellent advice. However
a day is too much and too fast for me right now. I wish you could
understand that I'm doing good to handle an hour at a time.

PLEASE

PLEASE, don't ask me if I'm over it yet, I'll never be over it
PLEASE, don't tell me he's in a better place, he isn't here with me
PLEASE, don't say at least he isn't suffering, I haven't come to terms with why he had to suffer at all
PLEASE, don't tell me you know how I feel, unless you have lost a child
PLEASE, don't ask me if I feel better, bereavement isn't a condition that clears up
PLEASE, don't tell me at least you had him for so many years, what year would you choose for your child to die?
PLEASE, don't tell me God never gives us more than we can bear
PLEASE, just say you are sorry
PLEASE, just say you remember my child, if you do
PLEASE, just let me talk about my child
PLEASE, mention my child's name
PLEASE, just let me cry

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I hope this works, I'm going to try to post a few pregnant pictures of me a week before Kassandra was born.

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I had Andy read my journal last night. He said everyone is so sad for me and can tell I'm depressed. I thought I was doing a good job at hiding it from our friends and family. I guess not good enough. Andy says they all tell him they just want to give me a hug. Well why the heck don't they? I think that's what I really need. I should have asked him that but I didn't.

I know you might be anxious to read about Kassandra's Birth story, I've tried to write it a hundred times but can't seem to do it. I just get to emotional. I'm know I'm just totally procrastinating, I just think if it write it It'll seem so real again and I can't pretend it was just a nightmare. I know if I write the Birth story I'll have to write about our short time in the NICU evidently her death. I just don't want it to be real again, I want to be pregnant with her again so I can have 5 more days with her or maybe I could demand the surgery or something. If could change anything I would, just to see if the outcome would have been different. She was dying anyways maybe the risk on the surgery would have been worth it. I know I should have demanded it, even though she was too small. What would have happened if I did would they have done it? I should have held a (unloaded of course, they wouldn't know that) gun to their heads then they would have had to do it. I wish I could go back in time.

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tears...........

I feel so horrible, its my fault, I didn't look hard enough. She could have had the surgery, I was just on another board and found this girl who's son had the same severe heart defect as Kassandra. I then pulled up her information and read her story about this Dr. in Oklahoma and how he had developed the life saving surgery that our children needed. I took his name and did a search and sure enough there it was. ALL I had to do was find it earlier. Now its too late and she'd dead, she didn't even get the chance to have it. Oklahoma...... I 'm so upset I hate myself and wish I'd die, I guess I didn't look hard enough for an answer. What if I saw it 3m ago, she might still be alive, I could be holding her right now.

Oh Kassandra I'm so sorry!! I wished I'd found it earlier then you might be in your Mommy's and daddy's arms like you wanted to be.

God, Why, why did she get all the signs for the surgery, 3 signs why didn't you give me one of those. Did I not pray hard enough, did I not deserve the chance. Why Lord Why.

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I've been crying and getting horrible panic attacks all day. Ive never cried so hard in my life, not even when Kassandra died. I'm having a hard time taking care of Nick. I just can't be there for him right now. I'm a horrible mom. He came up to me and gave me a hug and kiss, he said "its OK mamommy" And I still didn't calm down so he started crying two. I wish Andy was home, I can't handle all this. He called me at noon today and I couldn't tell him. I didn't want to ruin his day, he just started working a new job and is doing really good. I'm not sure I should tell him at all. He is already so angry at the Dr.'s He tells me all the time that he wants to find him and punch him hard. I don't know if Andy will be able to handle it. On the other hand I not sure if I can hold it in and not tell him, if I didn't I'd feel horrible for hiding it from him. I'd feel like I was lying. I just don't know what to do. We are finally getting along pretty good, I've got to be honest. I just don't know how he'll react or even how to tell him. I can't believe this, I could be holding her right now.
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Kassandra's Dr's had a surgery that is preformed in 3 steps. When she was a 3 days old 7 cardiologist and one surgeon got together and decided she was to small for the surgery, she needed to gain 4oz first. Also they wanted her a bit more stable, but they decided that there was nothing they could do for her because she was deteriorating. She was getting worse because she needed the surgery, and wouldn't get better without it. Well you know what happened next. Anyways this Dr had a different surgery that could fix it right away. I read that he did surgeries to babies that are unstable or their conditions were getting worse, basically their last chance. He even did one on a baby's death bed. I don't know if Kassandra's Dr. knew about this surgery or not. I do know that when they met to talk about the surgery they refused to let me in on the consultation. They all came in to examine her separately and I was only there for one of the exams, Then sometime on between their rounds when all of them weren't busy they met each other and decided that she was going to die anyways. I really hope they didn't know of the lifesaving surgery because if I find out one of them knew, that it they'll be done for. I'm going to sue them all the way to china.

I have never liked the idea of cloning, because my religion and I just don't think its right to play god. But right now I keep wondering if they did that to Kassandra then we could have her back and now we know of what could fix her heart. I know its wrong to think that way, but I can't help it.

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Well I decided its best to tell Andy, I can't withold information from him, expecially since it pertains to her. I just not sure how to do it. Maybe I'll just have him read my journal again. Yes I think that is best. Gosh, now I'm talking to myself again, this is not good.

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Well its been a few days since I've been here. I had Andy read my journal and he reaction was like it was no big deal, that really hurt me at first. Then I realised that it was just his way of dealing with it. Why the heck are men so stubborn when it comes to showing their true emotions? Why can't they open up like most women do? I really shouldn't complain about Andy to much because he has opened up on a few things I never thought he would. But I really do think he is holding back on a lot of emotions. I just hope one day he'll be able to totally open up and not worry about being strong for me. I know I've been a bit depressed lately, but I think that's because I don't have enough people to talk to her about. And don't have many stories to tell about her because her life was so short. I've always been a story teller, but I know it gets annoying to people hearing the same story all over again. I tend to repeat myself when I run out of thing to say about the subject that I feel like talking about.

Yesterday Nick scarred me half to death. It was the first time he's gotten sick since Kassandra's passing. His fever got up as high as 102.9, I was terrified that something bad was going to happen and I'd loose him too. I did everything I knew how to do to treat a high fever. After nothing seemed to work right away I called the hospital. They pissed me off because they wanted me to wait a bit longer before bringing him in. They said to wait an hour and if it didn't go down or if it goes up I could bring him in. I considered bringing him anyways. 103 if very high in my book. But I thought I'd at least wait half an hour. It did go down within 20min. I felt a little relief but not OK till 3:30 am when it finally broke down all the way. Until then I was constantly checking his temp. Andy though I was crazy and should just leave him alone. I slept on the couch with Nick the rest of the night. This was scary because Nick has always had an irregular breathing cycle when he sleeps, so you can imagine how nuts I went. We're both much better today.

On a side note a friend I meet on the birth defects board (who also lost her little girl to CHD) inspired me to make quilt square memorial for Kassandra. It'll help raise awareness to congenital heart defects (CHD) I'll fill in all the details when I get it set up and sorted out. This will be a good project for me, it'll give me something productive and memorial for me to do.

Tomorrow I see my councillor again, I'm not sure how that will go.

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Well this is what I wrote for the Memorial quilt. I've posted on my other parenting boards but haven't got around to putting it on PO yet. So far I have 3 squares reserved only 40 left to go!!! I'm so excited about this project, I hope it turns out.

I'm looking for help making a Memorial Quilt for Kassandra .

Thank you all so much for your support you have giving me. Many people have offered to help in anyway possible. I'm now asking for help with making a memorial for our dear Kassandra . I thought you would like to be apart of this memorial because she has also been a part of your lives and has touched so many. Since Kassandra had Ebstein's Anomaly, a very rare Congenital Heart Defect (CHD) I would like to invite anyone who quilts, sews, or could have a square made for them to help make this possible for us. If you would like, you may make more than one square. I'm going to take all the squares and have them be put together to make a quilt that will be placed on display at our local (and in the future possibly regional) library, museum, county fair, hospital, clinic and craft shows. In between events the quilt will be displayed in my living room. If interested please contact me, so we can make arrangements. I'll provide you with directions on how to make the squares and pictures of example squares.

After we receive all the squares necessary to sew our quilt together, I will also pick out my favorite square to send in Kassandra's name into the Congenital Heart Defects Awareness Traveling quilt where that one square will be added to their special quilt that is on display nationally!!!

Congenital Heart Defects (CHD) are the number 1 birth defect and the leading cause of birth defect related death, yet there is very little public awareness of the 35 known diagnosis of CHD. The Congenital Heart Defect Awareness Quilt Project was created to promote greater public awareness of CHD's, while honoring the strength, courage, and commitment of all those born with a CHD and their families The Congenital Heart Defect Awareness Quilts are a series of quilts honoring 42 individuals with CHD. The quilts are being constructed of heart blocks, with each block being dedicated to a child or adult effected by CHD.

THANK YOU ALL SO MUCH!!!

Here are the instructions!!! So you can take a peek to see if your interested. If you decide to do this Please PM me so I know how many squares are coming. I'll PM you back so you know your added to the list. Thank you!!!

Thanks so much for helping me do this. Here is the link to the directions for the block.

http://www.geocities.com/chdontheroad/directions.html

Here is the link to some exsamle blocks

http://www.chdquilt.org/blocksamples.html

The only thing I do ask is that the block background must be blue in color. Since Kassandra is an angel the block must have at least one angel in it, and these words must me on the blue square.

Kassandra Karen Hedlund
12/24/05 -12/29-05
Ebstein's Anomaly

Now if you may choose to do something a bit different than the regulations above, then I still will put the block on her quilt but it won't be one I choose to send in to the national traveling quilt.

If you have any questions or need more info on personalization, please contact me and I'll do what I can.

Some Ideas for personalisation...
x-mas theme, ballerina's, angels, pictures of her and family, girly stuff, baby designs, bears, Kitty's, hearts, clouds, stars, sun/moon, religious cross, baby's hand or footprints, Jesus material or what ever your heart desires (if she touched you in anyway, and you have an idea of something that symbolises what she did or has meant to you, that would be great if you did that!!)

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I'm going to my councilor again tomorrow, I'm really nervous again. Should I be feeling like this? Shouldn't I find comfort in knowing I'm going tomorrow? I don't know why I'm so upset. I guess I'm worried he's going to say something to offend me again, I just really don't have the options to find a new one. I had the receptionist print out Kassandra's story on the Caring Bridge Site. I wonder if he read it. Maybe then he'll see what we went though and see more of who I am and where I'm coming from. He seems to think most of my problem is guilt, I know a lot of it is. BUT I know most of my problem is missing her and wanting to hold her. He doesnt seem to think so. I really don't think these stupid questions he's asking me are doing any good. Who gives a FUCK if I'm nearsighted or far sighted. I want to spend my time talking about her and not me. I know he's the Dr. and know what he's doing, but I wished he's just tell me what he's getting at. I do not dare mentioning to him that I want to go to the cemetery and check on the stuff I put to decorate her grave with. He'll probably have a fit, and we'll get into that stupid argument on religion again. I really wish bereavement counselors have got to be a bereaved parent before being able to counsel someone who has lost a child. I just don't think he understands. Andy dose a better job at making me feel better than him, I think I get better counseling on parental loss internet sites that this guy. I have to see him though in order to have a release from working temporarily. Gosh I'm really not sure if I should go. No I think I'd better....

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Happy Saint Patrick's Day...Grrr I'm sick of hearing this. I'm beginning to hate all holidays. Whats so damn happy about it??? I'm not going to be wearing green today, I suppose I'd better put Nick in green though for him, its not his fault I'm depressed. I wonder if he's actually has anything green?

Hey Kassandra, how are you today, I don't suppose they celebrate holidays in heaven, do they? If you were hear with me I'd dress you up like a clover for you would have been my good luck charm. I miss you so much baby, I hope you know that. I started a project for you, I can't wait till its done. You and me together could have done great things, now I have to try to do them on my own, for you sweetie. Last night I was thinking about you again, wondering how big you would be, I took out your little clothes and prayed that I could dress you again. It is so hard knowing I only got to dress you one time. As you know I got a duplicate of the out fit your auntie Sarah bought you for Xmas, the one I dressed you in. I look at it all the time thinking, by now it wouldn't of fit you anymore if you had lived. Well Nick is crying right now So I go to go. Please watch over us today as we travel to see the councilor. Love and miss you so much sweetie Love MOM

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Well, my appt went.. not good nor bad

Something bad happened tonight. I don't want to talk about it. I just am so confused and outstanded on why this has to be.

Kassandra I know you love me, and I love you too. Goodnight sweet little Angel, sleep well. Its Ok. I promise. "Jesus loves the little children... Jesus loves me this I Know for the bible tells me so....Love your Mommy

God, I have one queastion for you. WHY>>>>

Good night All...

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When I was down at my lowest, I heard this song on a radio station that I rarely listen too. I just happen to be scanning and it came up. I Felt something telling me to listen to it, so I did... I'm doing much better now. I think I'm going to come here and read this every time I get down.

Cry Out To Jesus
Words by Mac Powell / Music by Third Day
To everyone who's lost someone they love
Long before it was their time
You feel like the days you had were not enough
when you said goodbye

And to all of the people with burdens and pains
Keeping you back from your life
You believe that there's nothing and there is no one
Who can make it right

There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus

For the marriage that's struggling just to hang on
They lost all of their faith in love
They've done all they can to make it right again
Still it's not enough

For the ones who can't break the addictions and chains
You try to give up but you come back again
Just remember that you're not alone in your shame
And your suffering

When your lonely
And it feels like the whole world is falling on you
You just reach out, you just cry out to Jesus
Cry to Jesus

To the widow who struggles with being alone
Wiping the tears from her eyes
For the children around the world without a home
Say a prayer tonight

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Ok back to my story....

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SATURDAY, DECEMBER 24, 2005 01:11 PM, CST
Katie's going in for a c-section tonight

This is Katie's sister Sarah. I need to make this short since we are also getting ready to leave for Minneapolis. She is at the hospital and they have decided to give her a c-section as soon as Andy gets there, which will probably be around 8pm tonight (CST). Kassandra's heart rate isn't doing as well as they hoped and same with her breathing. Please send PT&P for her.
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So anyways, my aunt took me to the hospital and I got all checked in. Had all the routine checks again which took over an hour. The peri came in and said that Kassandra was going down hill and they wanted to deliver her. They told me my best chance to have a min with her was to have c-section, they did however make darn sure that I knew the C was an elective, and if it was up to them we'd do a vaginal deliver. They did check my cervix and I wasn't effacing or dilating yet, so they'd have to induce right away. They didn't think she'd live once she was born, so the risks from me on the C were high with out nothing to show from it. I didn't care I knew in my heart that a c-section was her best chance at life. They wanted to do it really soon, they did however tell me they'd wait till Andy got there. I was relieved. I called everyone up to let them know I was delivering soon. Andy was on his way. I sure he was frightened. I tried to get some sleep but people kept calling, I wanted to rest so I'd be alert when she was born. Ever time they came in and checked my strip I was terrified they had to deliver right away, I was scared something would happen and Andy wouldn't make it for her birth.

Finally Andy arrived. By then I was already prepped and ready to go. The Dr.s were waiting. Andy had to change into scrubs, he looked so different!! They sent me in first and said they'd bring him in a bit. They did the spinal block and catheter. I keep thinking please don't hit my spine and paralyze me. I couldn't believe it, they started cutting before Andy arrived I was freaking out and yelling for him. I wondered where he was. He made it. The room stunk really bad, it made me nauseous. It smelt like burn hair or something. I was having a hard time breathing, they upped the O2 a bit. I started to gag and almost choked on the nasty stomach prep they had given me earlier. Andy was right at my side. Soon they said she's almost out. All of a sudden we had two cries!! We both had tears in our eyes, she was Alive!!!!!! We thought she'd never be able to cry but she did! I knew there was hope, I knew I'd be able to hold her alive!! They never let me see her though, they whisked her off to the next room. Andy said she had hair and looked like Nick! There was a window in between the rooms, so Andy took pictures and kept checking on both of us and telling me what was going on. I was surprise when they were done stapling me up, originally they told us they'd be done with her 1st. They were having problems getting the umbilical lines in. They sent me recovery and promised that they'd let me see her when they brought her to the NICU. They sent me to recovery. My parents and siblings were there!! I was so happy to see them, they even brought Nick with.

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SATURDAY, DECEMBER 24, 2005 08:54 PM, CST
Kassandra is here!

Welcome to the world Kassandra!

Kassandra was born at 7:29pm tonight. We got to the hospital right in time and we were able to see her as she went to the elevator to the NICU. She's beautiful!!! She weighed around 3 lbs 12 oz. Her agar scores were both 8! She did cry as she was born, but was a little purple. Her color looked good when we saw her and she's now on oxygen. They are doing all the tests on her heart right now. We haven't seen Katie yet as she's still recovering. It's awesome to have Internet access in the family waiting room so I could give you all an update! Merry Christmas to Katie and you all!
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Sarah
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SATURDAY, DECEMBER 24, 2005 10:02 PM, CST
I was just in to see Katie. She's doing well (other than starving!) and will be going over to the Children's Hospital soon to see Kassandra. I'll keep updating as I have time. Katie said that the doctors didn't think that she'd make it through the delivery, but she's a fighter!
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Sarah
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Here's a ton of Pictures with little stories by most of them.

Kassandra 1min old Xmas eve

I'm in recovery, shaking beyond belief. My legs were still numb. I was holding a picture of Nick, waiting to meet Kassandra for the 1st time (it was taking them longer than expected to stabilize her for transfer to the NICU) And hoping to see Nick really soon!

Kassandra on the way to the NICU. This is the 1st time I got to see her!! She was on her tummy and naked! I hope she messed for them on the way there!! I was a 10 min walk through an underground tunnel, made in 5min. Andy said he could hardly keep up with the Nurses on the way there. I just wanted to get out of recover so I could meet them there! They said I couldn't go till I could move my legs, I tried so hard!! I also was starving and begging for food but they wouldn't give me anything:bite

Andy took these pictures of Kassandra in the Nicu, I think she was 1hr old




Here's pictures of Kassandra at 1 1/2 hour old. I finally got to go to the NICU. I only got to spend a little while there. They rambled on about the rules and what to expect but I really wasn't listening...LOL I WAS IN TOTAL AWWW... I also had a really hard time touching her because I was still in the bed. I hadn't even gone to my room yet at this time. I was very tired. But really didn't want to leave her. That's Sarah's hands in the picture with Kassie. At this time when when My two sisters, mom and aunt took turns going in to visit Kassandra. Andy had taken my BIL Aaron, my brother and my dad to meet her a few min earlier or later. (I really don't remember LOL) There was a 4 person limit at her bedside. Nick only got to meet his sister a few seconds when they passed the family room on the way to the NICU. I wish I could have been there for that. I'm a bit sad we have no pictures of them two together. Andy didn't want to take the chance of having Nick in the NICU, we didn't want him getting any of the babies sick.

Here's two more pic of me at the NICU, The 1st one I was so happy they finally gave something to eat!! only ice though but it was a step closer to the steak I wanted!! LOL (I never did get that...:giggle) The 2nd one is me and my Nurse, she was so nice!! I was kind of sad when they moved me to another station after visiting Kassandra, I never saw that nurse again.

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Ok are you all ready for Xmas day photo's?? I some but Sarah is going to have to send me the rest.

Here's me finally eating!!!!! It had been a day and a half with no food!!!

Ok I'm sure you don't want to see any more of me, so I'll show you lots more of Kassandra!!!!

Here's Sarah (sarahdawn) with Kassandra, I'm so glad Kassie got to meet 2 of her 6 aunties, and one great aunt made it there. She meet her aunti Karen in heaven. I feel so bad for the other aunties and family that never got to meet her. Oh my, I just realized that we never got any pictures of her with her unckles Josh and Aaron. I can't belive we don't even have a piture of her with my parents that were able to make it there.

Here's some more pictures of her. Kassandra had a hyperextended left leg due to positioning in the womb. She got it stuck under her chin one day and she was too weak to get it unstuck. After being positioned like that the cartridge grew and muscle stayed like that. It was a unforseen but fixable condition, and tends to happen in weak babies. It didn't hurt her at all, and if you moved it she'd move it right back where she had it. We had no idea that this had happened till she was born. I never even noticed it till the nurses told me the 2nd time I saw her.
It was an intresting task for me to try changing her diaper with it and all her tubes and wires. She was so patient with me, it took me like 15min+ to change her and check her butt temp. She never fussed very much only when the nurses did it, because some of them were fast and didn't always warm the wipes up to the temp she liked.




Here are some pictures of Kassandra with aunti Jenny.


Here is some "mommy and me" pics!!! I just realized we don't have manny pictures of "daddy and me" We kindof took turns going to the NICU so someone was there with her most of the time. Except the last day when we both were by her side the majority of the time, only to leave for the bathroom or to the chapel to pray.



Here's one that was sarah's idea to take! I'm glad she suggested it, now I can remember how little Kassie was. She had Mommys feet and daddys hands. She had my family's nose, and Andy's family's mouth. I think every day she changed a bit.

Here's one on the 26th of December. Thats the only picture we took that day because she had a ton of x-rays and echo's and was getting really stressed out by all the stimulization. After that picture she got moved to her own room, then seemed to calm down a bit. That was the first time we almost lost her. It was scarry, they weren't sure if they should move her. But it wasn't that far and was really her only chance. I think they were also preparing to tell us that they couldn't do the surgery and at this point I belive the Dr. knew she wasn't going to make it. We however still had hope.

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MONDAY, DECEMBER 26, 2005 04:00 PM, EST
Hi all! Thanks so much for the hugs and prayers! They are working, Kassandra is doing great! She's so sweet. What a fighter! I don't have much time to post but will let you know more tomorrow! Kassandra is on a ventilator, but it is figured she can breath on her own! Its for a precautionary measure due to one of her heart med's. Her heart rate has been fluctuating but she is stable. Tomorrow she will be seeing 7 cardiologists and a surgeon! They will have a discussion on what will be the best treatment for her heart. She has her very own nurses at her bedside 24hrs per day! They are taking great care of her. Andy got settled into the Ronald McDonald house last night. I'm doing fine the C-section was weired but not as bad as I thought it would be. I have some pain but am up and moving around, I also have been pumping for when she gets to start eating, If all goes well by the end of the week, they want to make sure her intestines can handle it first. TTYL Katie
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Here the pictures from the 27th. This is taken in her own private room



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TUESDAY, DECEMBER 27, 2005 04:36 PM, CST
Kassandra isn't doing well...

Katie called me today. Kassandra had been doing very well, but she took a turn for the worse today. Her heart rate has been increasing every time she is being checked by the doctors and it hasn't been decreasing afterwards. Last night her little heart was beating at 177 beats/minute. They can't do surgery until she's stable. I haven't heard any updates since about 11:30 this morning but will keep you posted. Please send PT&Ps for her.
__________________
Sarah
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TUESDAY, DECEMBER 27, 2005 07:55 PM, CST
Update on Kassandra

I just spoke to Katie and she wanted me to update you all on Kassandra. She is stable and has been moved to her own private room where she seems to be doing better. Her heart rate is still above normal but does go down a few bpm when mom and dad are nearby
Wendy
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WEDNESDAY, DECEMBER 28, 2005 10:02 PM, CST
Late last night Kassandra had a really bad night, we almost lost her once. But she's a fighter. We stayed with her most of the night and comforted her. They had maxed out on meds, O2, and all other comfort measures. It was up to her, to decide on what was next. She chose to stay with us! at 2am she started getting better and was doing excelent by 7am. at 9 they resumed her testing and she started stressing again but remained in fair condition. This evening she was starting to lose her o2 saturation again so they maxed out on vent air again but now they weaned it down a bit. She was in good condition when we left the NICU tonight. Hopefully she will stay stable till morning.

Last Night I only got 2hrs of sleep and a few the night before. I'm so tired that I keep falling asleep while pumping. I've spilled 2xs. My milk came in tonight! It was rough the first few days to find the time and energy to do it but we did! Wendy and Sarah gave good advice! THANKS you two! My Insurance is renting a hosp grade pump for me! It really helps. Kassandra hasn't had any of mamma's milk yet but I'm hoping by the end of the week they will try it on her.

If you were wondering we haven't gotten to hold her yet because it most likely would over stress her. She gets really stressed is even the smallest stimulation. We do talk to her and touch her softly frequently. She has now started to peek her eyes at us! every 4hrs the nurse let me do part of her cares. I do the diaper changing, mouth swabbing, temp check and help turn her on her side. Andy is usually busy ordering the nurses around and demanding answers to our questions! Its so cute how he gets with them!

BTW in all the confusion I forgot to update you on this...

SHE DOSEN'T DANDY WALKER SYNDROME!! HER BRAIN LOOKS FINE!!

Today I was discharged from the hosp, I'm now at the Ronald McDonald house. Its great here, I'll update you all on that later! I'm going to bed now! Night! Keep sending prays! Katie

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Ok here's the the only one we have for the 28th, The night before I was in her room with her holding her hand all night, (I didn't even leave to pump, I just pumped right next to her). I never though once to take any pictures. Kassandra had a tough night on the 27th but all it took was her daddy to come in and hold her had too! She wanted both of us there together that night!! I remembering going to the chapel, I cried so much, I begged, pleaded and prayed for more time with her. I screamed, people must of thought I was going nuts because they sent in a security officer in there. He just asked if I was OK and left right away. I remember telling God to take me instead. I did come to the point that if he had to take her, she needed to be baptised, and we had to hold her. I wanted to make sure her journey to heaven was peaceful.

On the 28th I got discharged from the hospital so I missed the larger part of the afternoon getting my pills, bathed, and getting settled in the Ronald McDonald house. I at a free hot and very tasty supper there and went back to the hospital to say goodnight to Kassandra. I was so tired I feel asleep on the 5min drive to our room. I woke up numerous times to pump and call the hospital. But I still felt relaxed at the place. Thank goodness the Ronald house was there, they really made me feel a little bit more comfortable, so I could get the last of my rest.

Sorry The pic wouldn't upload, I'll try to fix it later.

On the 29th I woke up at 7am and called the hosp to see how she was doing and if I should come up there, they assured me she was fine and to get a bit more sleep. So I pumped and laid down again but didn't sleep. I waited for Andy to wake up to take me there. Then the hops called at 8:30 and said we needed to come up there right away. I freaked out and screamed at Andy to get up. We were dressed and out the door in less than 3min. We got up to the hosp and they told us that she could go at any time, they wanted us to hold her before she went. We were terrified and still had hope for her, I was also scared that if one of us held her 1st she's pass away before the other one of us got a chance to hold her. We finally agreed to hold her together but with the blankets and sheepskin under her for support. We didn't want to move her much and stress her out. Here are the pictures from that day. They are really dark because the light would bother her so we kept it on dim.

Daddy's hands...



With mommy and daddy...



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This is her cozy picture! She loos just like Nick in it. Everyone loved her blanket we bought her, it was pink plush with a decal of Winnie the pooh holding piglet's hand and walking away. (that to me is like an angel guiding Kassandra home) that blanket we buried her in.
Thought that day we stayed with her, only to leave to got to the bathroom. We held her hands and I sang "Jesus loves me" and "Jesus love the little children" many times to her, we talked so much my throat hurt.

This blanket was her Xmas present from auntie Jenny (we are going to use parts of it to make a bear to take our family photo with)

These are "so pretty pictures" The nurses had her all dolled up when we got there, I just loved the bow!! That was one of the many things we saved from the NICU. They used a dab of aquifer() cream to hold it in place. I guess that stuff is good for lots of things not just butt cream, lol
In some of these pictures she's trying so hard to open her eyes. The Nurses told us that they'd never seen a baby with such low O2 stats open their eyes. I think the stats were around 40's% at this time?


Here's a few of her room. The last one has Andy reading her chart(it was thick!!) The nurses keep hounding us to ask questions about it. The last day the alarms would go off every two minutes and one time we shut it off ourselves and we got yelled at.. oops we knew we weren't supposed to touch it but man it really was annoying(I can imaging how Kassie felt listening to that too), especially since the nurse wasn't there for a min to shut it off.


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That evening she was getting worse, to the point that her liver was greatly enlarged, her kidneys were shutting down, and we knew she wasn't going to come out of this down. We decided that we should hold her for real, as she passed on her own. I felt that instead of doing things for her we began to do things to her instead, and I just couldn't do that to my little girl. The nurses urged us to take her off the vent but we couldn't. We decided to do things on our own terms. We had them call the Chaplin to baptise her. I prayed he's make it there in time. We told them to take her off the medication so it would be easier to transfer her to my arms, (we had many troubles in the NICU with her umbilical lines, and I didn't want to hurt her any more) They handed her to me, I cried thinking now she was going to go, but something strange happened. She just opened her eyes wider than ever before, she reached her little arms toward us. Her stats went to what a healthy babies Sat's would be, she never had that good of stats ever!! We were so confused, had we made the wrong choice? We need to talk to the specialist, in the mean time I ordered that she be given her IV food/water but no meds(at least till we got things figured out. Andy told the Dr's that something was playing with our emotions, he was crying. This is what we prayed for a miracle. I held her for another hour while the Dr. and Andy were arguing. I really didn't listen, I just peered into her eyes. I now understand what was happening, god was giving us a sweet memory of her, something we'll never forget, and my grandma helped me come to realise that at this time Kassandra was transforming into an angel.
Here are the sweet pictures!!!


I have a few more I want to share, but I can't right at the moment.

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I can't believe its almost her 3m birthday. For so long time seemed like a standstill and now it just seems like yesterday that I gave birth. I wonder where did the time go? How could 3 months pass by without me noticing the time. I celebrated her other monthly birthdays but I don't know what to do this time. I was hoping it'd be nice this month but it's starting to snow again. I would have liked to go to the cemetery. I don't think I can, I'm so sick. I have no energy.

I hope people would remember her tomorrow, on her special day. I wished my friends and family would realize that talking about her doesn't hurt me it helps me. In reposting my PG journal and working on her birth and life story it has helped me realize that her live wasn't 5 short days It was 8 1/2months plus, 5 days long, and a lifetime of memories.( I know this but tend to forget it when I'm grieving) I wonder how many people her story has touched. How many lives did she save? We will never know. Hopefully It will be more than I can count. She was a fighter!!!!

SENDING KISSES TO HEAVEN FOR KASSANDRA!!!!!!!!

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Happy 3 month birthday Kassandra, mommy loves and misses you very much!!!!

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Opps I think I must have my timezone mixed up, because I know it was before midnight when I last posted.

Anyways back to Kassandra's story

After holding Kassandra for an hour and a half our hope got shot down again, Kassandra's heart, BP, and body temp started to decrease significantly, she was starting to fall asleep again. It was so hard to see her go through that. We turned up the heat in the room till we were all sweating. We bundled her up with her hat and blankets, she was getting so cold. It really didn't hit us till then, when we finally realised that we didn't have much time with her left.

It was taking the lutheran Chaplin a long time to get there, so they called in an emergency one, we wanted to make sure she was baptised while she was living. They brought in a small seashell to put the holy water in, they had a nice white weaved cloth with an embroidered shell on it to wipe her forehead off with. We got to keep these items and will cherish them forever. This is the most bittersweet picture we have.

Immediately after the Chaplin removed he's hand from her forehead, she let out a tear in each eye, (she knew she was leaving us and we think that was her way of saying goodbye, she had never had real tears before) She looked like she was fighting the vent, I don't know how it came to be but I told them to take her off it then (we had considered and been pressured to do it before but we had never decided to or were ready to till then) they asked Andy's permission then did it immediately. I wanted her last few minutes to be with out that darn tube in her mouth, and to die in peace. Although I'm very happy that I got almost 2 1/2 hours to hold her alive, it felt like only 2 /12 mins.







She lived for a few minutes after wards. She died @ 7:29pm exactly (to the min) 5 days old.

After she passed away Andy was really upset and didn't know what to do, he wanted to remember her when she was alive so he left right away. apparently he decided he wanted to go home. So he went to the Ronald McDonald house and packed all our things and loaded it in the car. I however stayed there. I held her for a long time, and gave her a bath. I dressed her for the first and last time ever. She was in a cute comfy preemie outfit that Sarah gave to her for Xmas. The nurse took a ton of footprints and hand-prints since they hadn't done that yet. They wanted to help me pack her things but I wanted to do it myself. For beings only 5 days old she had two big bags of things! People from the NICU gave her Xmas presents and stockings. Most of it was from parents of children that were in the NICU over past Christmas's or for a very long time. I kept a lot of her medical things as well. I even got a few diapers from them. They gave me some books and pamphlets to read. I got a nice memory bag with a special neonatal memory book to put her special stuff in. After that Andy came back. We talked alone for a short bit and decided to leave. I swaddled her up in her pink plush blanket and kissed her goodbye for the last time. I was on my way out and I got 10 feet and tried to turn around (I didn't want to leave her) but the nurse put her arm around me and led me out as Andy brought the car out front.

The weather was terrible on the way home it was a huge snow storm and took us 7hr (instead of 5) to get home. It was so hard to call our family and tell them she was gone. I didn't know what to say. I have no idea how we made it back safely we saw so many accidents and cars in the ditch, our new angel must have been watching over us. We cried, talked and cried some more. The only song on the radio I remember hearing was wake me up when September end's ( all I heard was December though) This song makes me cry!!!!!!!!!!!!!!!!!!!!!!!!

GREEN DAY LYRICS

"Wake Me Up When September Ends"

Summer has come and passed
The innocent can never last
wake me up when September ends

like my fathers come to pass
seven years has gone so fast
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

summer has come and passed
the innocent can never last
wake me up when September ends

ring out the bells again
like we did when spring began
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

Summer has come and passed
The innocent can never last
wake me up when September ends

like my father's come to pass
twenty years has gone so fast
wake me up when September ends
wake me up when September ends
wake me up when September ends

I found out the next day that we could have drove her back home with us and brought her to the funeral home ourselves, I'm sad we never got the opportunity to do that, I could have held her longer. I don't think we would have though because I don't think Andy would have been comfortable with it. So I guess it worked out. It was really hard to know she was so far away and that we had to wait for the funeral home to pick her up because all the snow.

After we left the nurses took angel pictures of Kassandra for us, but I'm not ready to share them yet.

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I don't know how it hapens but sometimes when I hit post it double posts, I know I only hit it once this time. How do I delete this post?

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Man why do men have to be so damn stubborn, why do they think they need to hold all their feelings inside them?? Andy's very upset at me, he thinks I should keep certain feelings to myself that the feelings are mine and I don't need to show the whole world. I don't know, I think since I started this journal and post daily at a loss site I feel so much better. I'm an honest person and I get to show it here. Its nice to get everything out in the open not to hide my feelings, then I feel like something is a lie. I could never privately do a journal, I think I'd feel weird writing to my self. I wish he just realise that this is helping me not hurting me. He's got it stuck in his head that the computer makes me more depressed. I would feel totally alone in all this if I didn't have online supporters. I mean Andy's OK but its just a woman thing I guess, more sentimental maybe? Besides he's gone all day and most the evening, and goes to bed way before I get a chance to. We only get to talk on weekends, but it seems like every Saturday something is going on.
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Today is Kassandra's Angel day, its only 1am and I'm already a mess and can't sleep. (will I be up for 2days again like her angel b-day?) I have no idea what I'm going to do today or how I'll be. I just keep thinking of her and what could have been. I'm so depressed. I just want to hug her so bad. I'm going to pray to god to help me get through this day.

I wish people I know would talk about her or ask questions or even ask for a pic, i think they are scared that it'll make me feel bad

On another note the people who are talking to me are pissing me off. I've had 3 people come up to me since she's been born (one was just last night) telling me about their abortions they had, not for medical reasons but as birth control. Why do they have to do this, don't they understand that is not what I want to hear. The first two I think were grieving they're loss and felt guilty for it. But this last one had no remorse over it was seemed to be happy about it. SICK!!!!!! When she told me about it I asked her if she knew that I lost my daughter and what had happened, she said yea and that she "supposedly had helped my dad cope with it" Knowing how we all felt you'd think she'd just kept her mouth shut, I never want to see her again, and I'm going to tell my dad to tell her to get lost if she keeps coming up to me like I'm her best friend.

Well I'm going to go sulk for a bit, i need to try to get some sleep in order to get up with Nick in the morning.

Kassandra, mommy is thinking about you. I miss you so much. I hope you are playing in the clouds with Jesus and your new friends. Have you meet your great grandparents yet? I bet your uncle John and aunt Karen are looking after you from me. Tell them all hi for me and give them a kiss. Love you always. MOMMY

Dear Lord, thank you for the time you gave to us to spend with Kassandra. I wished it was longer but am very thankful for it being some time. It is some comfort to know she's there with you and not in any pain. She doesnt have to see how awful this world has come to be. I can't wait to see her again I hope it will be soon. thank you so much for letting me have my son Nick here with us, I don't know what I'd do without him. Please keep him safe. Please help me get through these rough days, show me the way lord. AMEN

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Just some insperation I found today.

You're gonna fly with every dream you chase
You're gonna cry, but know that that's okay
Sometimes life's not fair, but if you hang in there
You're gonna see that sometimes bad is good
We just have to believe things work out like they should
Life has no guarantees, but always loved by me
You're gonna be

Angels are forever
We were chosen to become the family of a very special child.
Who would come to earth from Heaven and visit for a while.
There are mothers who give birth to babies, too good for this world of men.
They touch our lives for a moment, then travel Home again.
This was to become our destiny. And, Why? We need not know.
For a parents greatest gift is to nurture and love a child with a perfect soul.
Our baby was born an Angel and stopped to pause this way,
Blessing us with sunshine, as we thanked the Lord each day.
Our child was like a ray of perfection and could not journey long,
The source of power being God Himself, quietly called our Angel Home.
As we walk in Springtime meadows, with nature posing all around,
We see the beauty of our little one in every sight and sound.
Whenever I gaze at this beautiful world, or look at a blue sky above,
I know that Angels are Forever
Warming our hearts with their light and love.
Author unknown

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OK I'd like to know what happened to my post I made this afternoon????? I think someone is messing with me, thinks just keep going wrong with my post here on pg.org, I even had one turn up in the wrong forum. OK maybe I'm just going nuts. I don't have the energy to re post it now.

Anyways I'm such a mess right now. Its Kassandra's 3m angel day today. Since 7:29 I've been bawling, I miss her so much. I took out her stuff so I could feel close to her but now it just makes me feel farther away.

I had to put Nick to bed early cuz I was so frustrated, he understood though.

I just want to find myself again, I feel like I'm so lost. I don't think I'll ever be the same.

I keep thinking about her stone, I feel so bad we can't buy one yet. Spring is here and its not there.

I'm going to go sulk more, I wish I never got out of bed today, I barely did, and only cuz Nick needed me to.

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Last night Andy and I had a lengthy conversation about Kassandra, we miss her so much, but are glad she's not in pain. We wonder what it'd be like if she was still here, would she still be in the hosp? Maybe it was all for the better, don't get us wrong we'd do it all in a heartbeat, but at what cost to her? We wonder if we would have been different if we would have actually believed the Dr. that she wasn't going to make it. In our hearts her heart was perfect.

I'm going out to the cemetery this afternoon, I wonder if there will be a ton of snow still, or will it be muddy. I'm on my way out to get a few pink balloons to send off Kisses to Kassandra. I always get 2 extra, one for Madaline (ldkbaby00, daughter) and Keiran (jamielittle, daughter). I'm certain or girls are friends.

The girls from my parenting boards are being so sweet. lovelifeandfreinds.com are hosting a raffle to help raise money for Kassandra's headstone. This really touches me. After all they did on mommaville.com (alot of the same people from LLF) raising $ to help us out when we went to the cities in December to get ready to have her. I can't believe they are doing it again. (it is however a different person hosting it) I'm glad I have so much support from everyone on ALL of my boards. I go to so many loss sites, trying to find answers. I never really do but I get tons of support, and that what really counts. I'm really glad I have this journal, it allows me to open up, even more than I do with my councillor. mommysofangels.com has also really helped me, without them I have no idea where I'd be. It helps so much to talk to others that have lost their children. MISS, SHARE, The Compassionate Friends sites all have such great resources. And of course with so many different places that I get support on pregnancy.org (july 2004, birthdefects, general journals, pregnancy and infant loss, and the weekly grief chat) I'd be lost with out all of it. Thankyou everyone so much!!

I also have great news!!! Andy got another $1 raise from work! This is his 2nd raise since he started less than a month ago. I'm so happy he loves his job (which he never liked worked anywhere before) I can afford to be a SAHM now. Things will still be tight but this will definitely help!! I'm so proud of him!!

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yesterday went all right, most of the snow is gone but there's tons of mud. I took Nick out there with me and let him release the balloons, he thought it was neat. He really seemed comfortable and happy out there, he just ran around and played as I cleaned around the site. We added another metal flower and fixed the footprint stone I put out there last time. The temporary maker's paper got wet inside so the ink is wearing off. I can't wait to get a real maker

Its a beautiful site out in the country, kind of small. Up on a hill over looking a lake. Her grave is really close to a nice old tree and right next to her Auntie Karen's grave. There are wind chimes attached to the tree from Karen's funeral. It seems so surreal.

The whole time I kept wondering how she is, I know in heaven everything is sweet, but I wish we could have one little peek to see how happy she is there. Wouldn't it be nice to receive an e-mail and a picture. It would really put my heart on mend. I guess I just need to trust in the lord.

I wonder if I'm doing better now than I was when we first lost her, I have really begun to put my trust in god through all these hard times. I think I may look up my posts from then, then I'll know god is helping me get through all this.

I go see my councillor today, I'm wondering if he's doing me any good. I don't think so. I really should get a new one. Gosh now I'm getting into this again... Oh well I'm doing what I can anyways

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back to the story again

12/30/05 5:24am
we made it home it took a few extra hours but we're here. DH really wanted to get out of the cities and come home. Tomorrow we will be making funeral arrangements. This is so hard.

Planning her funeral was so hard, we wanted everything to be perfect. We had never planned on before and had no idea what to expect. Cost was also a factor, we wanted everything to be the best but couldn't afford it all. I went to SS to see if we could get some help, beings that at the time we were not working. They helped out with the coffin, that was nice. We didn't get a choice on which one or which color, but it was a small white coffin.

1/1/06 10:26 pm
Yesterday we went to the funeral home to make arraignments. Andy and I had many conversations about it the night before so we were a little prepared for the meeting. We picked out the hymes and special songs that will be played. We are also going to have my midwife read the story that Andy and I wrote about Kassandra's life. I found a really nice poem for her folder. The obituary is finished, and the rest of the details are being ironed out. Andy went to map out the grave site today. We will be able to bury her even though its winter. They will put a heater on the ground to thaw it out a bit. The hardest part was to see the tiny casket. It all came realistic then.

Kassandra's body was transported here yesterday. It was a relief to hear it arrived safely. When I went to the funeral home to tie up some loose ends, I had to identify the possessions she had with her.(After Kassandra passed away I got to give her a bath and dress her) Apparently after they embalmed her they didn't get her dressed again and sent her clothes and blankets separately. It wasn't to hard to see the clothes but it was sad to know she was just lying in there with out her clothes and blanket. They even took her diaper off.

We are having a family viewing tomorrow at 2pm at the funeral home. The funeral will be Wednesday at 2pm at Hope Lutheran Church.

All we have left to do is to get flowers and to make up a board for her. I'm putting my posts and updates of our journey on it along with all of MV hugs and thoughts. Wendy is helping me with this. I have pictures of her for it and also her baptismal stuff. A tiny diaper and a hair bow that her nurses had on her the last day. We also have a set of her hand and footprints to hang up on it.

Mann all that was so hard, and in such a short amount of time. The day I went to identify her possessions was awful, I wanted to see her so bad but knew they wouldn't let me, especially if she had no clothes on.

The viewing was bittersweet. I was so happy to see her again, I was so paranoid they got her mixed up with another baby. The funeral director told me that this may be the last time I can see her. He said that the embolment process doesn't always take well to babies and that she might not last till the funeral. We were also told this before they brought her home, I was so worried we couldn't see her again. I'm glad she lasted another few days till the viewing. I really wanted our family to meet her since a lot of them never had the chance. She was dressed in her pink gown that we put on her at the NICU, she had a pink hat on, and was wrapped in her pink plush blanky, she looked so small. We had a bear, tiny book, and an angel in the casket with her. Andy did not go to it, he wanted to remember her the was she was alive, at first I was upset with him but then I understood. I took Nick along with me. Its was mentally and physically (due to the c-section) painful. I just stood there with her the whole time while others came and looked and offered their condolences. I don't remember a thing what anyone said, I was just thinking of Kassandra and how this may be the last time I ever see her body. I decided to take her hat off her head because in the NICU she never really wore one and I wanted to see her hair. She was so cold, it hurt so bad. It was just awful because the hat left ribs on her forehead and her hair was so messed up. I had spent a long time washing and combing her hair the way I wanted it before I left the NICU. When it was time to go I felt like I should kiss her goodbye again, but I didn't. I had already done it in the NICU before we left, I couldn't do it because she was so cold and dark in color. I did however hold her hand and then kissed my finger to touch her goodbye.

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