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
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.
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
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
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.
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.
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!
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.
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.
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???)
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
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.
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"
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.
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
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.
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.
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.
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
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.