Thread: Missing my baby angels Kassandra and Nevaeh

As Kassandra was with us during these days last year, I cannot help to think about everything that went on. My mind has been going crazy

I know I've wrote about all this before,but I'm doing it againg, because I CAN! I love my journal, not why I'm here, but that I have a place I can go to write down my feelings.

On the 24th was awesome, hearing her cry and knowing she was alive was great.

The 25th was great as well we found out she didn't have dandy walker. The 2 best Christmas presents I could have ever received!

On the 26th things began to run down hill, things got a lot tougher. That's when it hit me that she might not make it, but we still had hope and were promised to have 7 cardiologists and 2 neonatologist get together to assess her for her only one chance surgery. I began doing her cares for her every 4hr.

The 27 things went bad, she started to get worse to the point that the Dr.s decided not to even get together to meet her because she had a few bad episodes and had to be moved to her own room with less stimulation. After that I was so scared to touch and talk to her much, she stressed very easily. Her HR and BP was slowly creeping up. Later that night she we almost lost her but she settled down as soon as daddy came and talked to her. I spent over an hour in the chapel begging pleading and crying. I finally calmed down and then spent the rest of the night awake with her. I really think she was picking up on my stress, I had to pull it together.

The 28th they decided for sure there was nothing they could do, she was just too small and sick for surgery. She kept getting worse. We had finally maxed out her vent settings, and her O2 levels were down. And the nurses kept bothering me about life support and decisions to make. I got discharged from the hospital, and spent the night at the Ronald McDonald house, it was so hard to leave.

On the 29th I woke at 6am and the nurses told us she was doing fine and to get another hour or 2 of sleep. Then 1 hr later they called back and said they needed us there. She had coded. She was stable when we arrived but they said there wasn't much time. It hurt bad, so bad. The nurses had her so pretty when we came, her sheet had red hears on it, she had a nice red blanket and a cute little red hair bow They finally decided that we should hold her. I was too scared. I still was trying to hold out all hope for her, I wasn't ready to give up not for anything! There was no way we could sit down and hold her together at the same time. I worried one would hold her and she'd let go, so we stood and held her till our arms went numb. We put her down and hung out in her room with her. During that time her liver enlarged alot, she was getting jaundice and her kidneys were shutting down. Her lower extremities weren't getting the blood oxygen it needed. But even with O2 levels being so low she still managed to peek her little eyes open and look at us, the nurses told me they'd never seen a baby do that in all their years there. So bittersweet. She got worse. We didn't know what to do. We decided that I should hold her in the rocking chair, in order to do this we decided to take her off her IV's and most med's (her u line was quite unstable since birth and we didn't want it pulled on and hurt her more) I held her and Miraculously she got better! Her O2 and BP was better than any time in her life, they couldn't explain it. She was looking at us reaching out. We thought she was saved for 1/2 it was so great. but things changed after that again. By the time the Chaplin arrived she was doing bad again, she was baptised and at the end she started spazzing a bit like her vent was bothering her. I finally was able to let go and tell them to take the vent out. Her last few minutes were peaceful for her.

So many more details I didn't mention, but I remember them all. Things are getting a bit fuzzy, I worry about forgetting the good memories, I know not now but years from now. I don't ever want to forget the warm fuzzy moments like her peeking eyes, and grasping our fingers.

Wow for the ups and downs, so bittersweet. I still thank god every day for that time with her, the memories, pictures and baptism. The greatest gift ever. On one of my trips to the chapel I asked god that if he were to take her from us to please let us hold and baptise her, our prayers were answered. Even though I still would have liked more time with her, he let me let her go on my own time.

On Kassandra's birthday my mom brought her 8X10 picture to grandma's house to remind everyone to remember our sweet little angel, I wasn't there till the next day but it was very sweet of my mom to do that. Its so nice to have someone remembering my baby and calling me on those special day just to let me know she's thinking of Kassandra. Mom stopped by today, didn't say anything but I knew why she's come. THANKS MOM
My uncle gave me a hug on the 26th and said he had hear of Kassandra's birthday, that was nice but I didn't know what to say to him, since we'd never have talked about her before. On Xmas eve our 11yr nephew gave us a ornament of an angel that is a photo frame. he picked it out himself in for Kassandra's picture. I did talk to my sister Sarah on the phone as well. I wish everyone in the family would be that open about Kassandra. But I'm lucky to have what I got.


Kassandra's birthday was hard but peaceful. Today was much harder. I'm sort of a mess at the moment, but was Ok most of the day till 7pm rolled around.

Here's something I wrote at 9:30 tonight
one year ago to this minute was when the last time I held my baby, I just got done giving her her only bath, dressing her and taking foot and hand prints. Our last kiss before we left the cities. I wished we could have stayed longer but the weather was bad and we had to leave. It was so hard to walk away.


All month the weather has been good here in Minnesota, her birthday it was beautiful. We wanted to have a peaceful day on her birthday so we decided not to go to the cemetery till today. I had bought a plastic poinsettia arrangement to put out there. Its beautiful with red and white flowers, little gold presents and candy canes on it, and beautiful glitter. But today old man winter decided to show up and storm us out from going to her grave. But I guess thats the price we have to pay to have her buried in a beautiful rural location.



So we sat at home all day and cuddled on the couch as a family, Nick was very sweet today and handing out extra hugs and kisses, what I would do without him, I don't know.

Just a few things I wanted to include in my journal, all X posted.

I thought if I posted it here as well someone might run into it that may be able to help me as well as the BD/SN board (OP)

has anyone here had genetic testing done??? If so which approach did you take to it, how much did it cost?

After Kassandra was born they did another chromosomal test and fish studies (we did have an amino done before), the reason was because she looked so much like a turners baby and had alot of the anomalies associated with it. But the test came back negative a few weeks after she died. They never consulted me afterwards about further testing nor did I even think that we should have done testing for more rare deficiencies considering all the anomalies. We did decline an autopsy at the time of her death, becasue we knew the cause and didn't think it was necessary. No one told us that we could have done genetic testing or that it was possible that she had something rare. Now I sit here wondering. I know it would never change her outcome to know, but what about future children? What if it is genetic and thats what happend to Nevaeh too?

Also I'd like to add that when the Dr. were trying to figure out what was wrong with Kassandra in utero the pieces didn't fit for anything they were guessing it was. What I think now is that they were only looking for the one associated with Dandy walker and she DIDN'T have that, they misdiagnosed and confirmed it many times in the pregnancy.

So where do I go from here? I've done a shot bit of research on a few that are related to turners syndrome, but have yet to compare it with her medical records. Just associating the physical features its all there. So I sit here wondering on what to do next. I suppose I'd better talk to my MW first but I wanted to know what's all involved in genetic testing, and whats my chances of comming up empty handed. With our state insurance we'd have to loose one more child in order for them to pay for the testing. Had it been done during the pregnancy with Kassandra or on her during her life it would have been pd for.
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Thanks

What do they do? just take blood? how long do the results take? Do they do generalized tests or just certain one based on diagnosis's? I suppose we'd have to see a specialists to have it all done?

Kassandra and Nevaeh=2 we need a total of 3, how pathetic is that. On Kassandra's insurance (and my PG insurance) we could have had it all pd for but never had been given the option for genetic testing. I asked about it once at our 1st consult with Kassandra @ 20w but they wanted to check everything else out 1st, and they said we most likely wouldn't need it. The Peri's would let us know. But they never did. I forgot all about it the second they mentioned dandy walker and ebstein's.

To tell you the truth the 2nd appt that when they should have brought it back up (since by then they confirmed it wasn't chromosomal) but that dam Dr was more concerned about talking us into a medical termination than anything. Can you believe he actually had the Balls to tell me to go to another state to have it done since the legal time line in Mn had run out? What an arse, and this is AFTER we made our decision to not do it. Man thinking back on that I was pissed now that I realize what had happend with the genetic testing I'm beyond pissed.

Also Diane not knowingly inspired me to make a list of all the positive things about Kassandra's life/death. This is me responding to her thoughts and hug post to me about Kassandra's Angel anniversary, in the positive comments thread

Originally Posted by SparkleMomma

Katy, I have thought of you all day today. I am so sorry. You know that my heart is with you.

Kassandra is such a special Angel and will always be in my thoughts.



Diane

Thankyou Diane,

as I'm sure you read in my journal, it was a hard day but not as hard as I imagined it would be. I guess nothing is as hard as it was to lose her last year. Slowly but surely I'm starting to find a small hint of resolution with this pain. Even though there are 100's more negatives than positives I have to focus on the positives. Like how she touched other's lives, how many wonderful people I have met on account of her, how many people I may have helped, How she might have touched or influenced her nurses and Dr's so they might help another baby live, how long we had her, momentum's and memories we have of her, how very lucky we were to have met her and had her in our lives. I'm sure if it wasn't 3am I could probably think of a few more. (wow that list is longer than I have ever imagined it would be) Thankyou Diane for in a way getting me to think of this list. thank you!

http://asandboxgreeting.com/pearlsnpleasures.html

A New Years card, for everyone!

Thanks for being so supportive this last year
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My Cyber Friend

I haven't ever seen you,
but I know you're really there;
I click you into reality
like magic from the air.

Your voice is like an Angel,
though I really do not hear;
your hug as warm as any
of loved ones I hold dear.

You're always there for comfort,
or a simple word of cheer;
though you're very far away,
I always have you near.

You're a very special friend,
like none I've ever known;
as long as you're in cyberspace
I'll never be alone.

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I changed Kassandra's caring bridge websites background, updated, and added a few pictures to the photo page.


www.caringbridge.org/visit/kassandrahedlund

well that's it, after today it'll be the end of the 1yr anniversaries of Kassandra. whew its been alot to deal with the last 2 days.

{Some more reflecting on things that happened last year we never dealt with because I was so hurt I didn't care.}

The night Kassandra passed we got a huge winter storm, how we made it home I'll never know. We had only 5m left on our cell phone, so I called my parents house and told Sarah that she had passed and that we were comming home, and to call the family, I did the same with Andy's mom.

The next day I didn't know what to do. I'd never planned a funeral before and had no idea what to do first. 2weeks before she was born the birth-center's social worked had asked me what we wanted to do in even of Kassandra's death, when we were filling out her birth-plan. I was stubborn and said that were not planning for that because I want to keep positives for her. I said we'll deal with it if we ever get there. The day after she died I was kicking myself in the butt for it. I wish we would have at least been notified on what to do in event of her death. I actually would have been nice to talk with members of a loss board before she passed, to help me deal with it all. And also to get to know them all, first before spilling my guts out on something so hurting and private at the time. But thank goodness I found www.mommysofangels.com they were all so sweet that it didn't take long to get involved in the group. (I signed up on new years day but didn't post till after the funeral.) I've thought about starting my own board for families with bad pregnancy prognosis and after care but I decided not to. I just wouldn't know how to set it all up. Instead I talked to Chris the admin of MOA and she said we could add a forum for that sort of thing to the board if anyone should join in that situation. The group would be glad to help them get through the hard time, and we would be filled with joy if the pregnancy and baby would make it!

Rewind back to what I was talking about before I got side tracked...lol

The NICU did give us a pamphlet on who to plan a service but it didn't mention how to get started on the notifications. So I called the pastor of the church I had been attending and he called the funeral home for me, I had no idea what to say. I mean really what do you say? My baby died and I'd like to use your services?? {I guess at the time I was still in denial thinking I'll wake up soon and everything will be fine. I was worried about queastions regarding her death as well} Well I didn't wake up but the funeral home called me and we went on from there. And they never did ask the question about how she died. The very next morning they left for the cities to bring her home {something I would have done that night had I known in advance that we could have done itJust think I could have had 7 extra hours to hold her and say goodbye. Although I'm not so sure DH would have been up for it. Its something we could have discussed before hand. } The funeral home called and let me know when they had arrived in town with her. I so badly wanted to run up there and see her, but Andy didn't think it was a good idea. The guys at the funeral home were so very nice and courteous, I'm so glad they were there for us.

BTW its a bit fuzzy when exactly all these events happend so they may be a bit out of order.

I remember going to the church (by myself), I talked with pastor Paul about Kassandra's short life and eternal death, I took a songbook home with me and we prayed for a bit. Andy and I spent new years eve reading poems and listing to songs, deciding on pallbearers and whatnot, we wanted to be somewhat prepared the next day to meet with the pastor, and funeral director's. New years day we met and confirmed our songs, folder's, readings and people we planned on how the service would go. We picked out a guestbook book, and gave information on the obituary. Andy also went to the cemetery with his dad to pick out her plot and the grave digger had already been out there plowing snow so they could see which one there was to pick from in our family section. They put a heater on if for the remaining days to thaw out the spot next to Andy's sister who passed away from cancer 2 1/2yrs previously.

Everything seemed to happen so fast. Andy and I wrote a chronicle on her life for my midwife to read at the funeral, for those who never met her (I'm pretty sure I posted it all on here before). The funeral director e-mailed me with the obituary, we rewrote it ourselves to make it longer, I felt so bad it was so short, it didn't seem right. I wanted her service to be perfect. I emailed back the picture ans revised obituary along with the poem we wanted to include. The picture didn't send right so I had to bring in a hard copy, which meant I had to get all the pictured processed that the local Kodak machine. I ran in to towns people who asked about the baby we had. I had to have someone help me with the machine because I'd never used it before. that was so hard, I wasn't prepared to face the public yet. {I'm so glad things are easier now that what they were then}. When I got to the funeral home they had me identify her belongings that were sent with from the NICU, that was so hard, not so much her clothes but knowing she was laying there somewhere nearby, naked and there was not a damn thing I could do about it. Life sucked. { now I realize that it wasn't her just her body, and her spirit was in heaven warm and cozy}

All in all there were so many decisions to make in a short amount of time. It was hard to concentrate on all of it at once, not to mention worrying about what people were saying, or what the house looked like, who would stop over, how we were going to pay for this all, going out to buy clothes for us to where, my milk comming in and being severely engorged because of all the pumping I did in the cities. And forgetting to pop my pill as the pain would be increasing emotionally and physically from the c-section. With all the running I had been putting stress on my wound. {sometimes now I worry about scar tissue and future children, and how that may affected the pregnancy with Nevaeh} And most of all grieving the loss of my baby

Taking a break for now.

I think one of the worst things I could have saw was her casket the first time. The funeral directors brought it out after one of our meetings. We didn't get to choose because its the only one they had in stock. It was white and tiny. We both lost it when we saw it, thank goodness they kept that for last. I felt my heart skip and drop, I just wanted to go home and crawl in bed again. { That's when things started getting real to me, even though I was still denying it all I knew she was gone but I just couldn't let go of her. That night I got very angery at god, I stayed angery at him for a very long time, I'm not anymore. I've realized so much since then.}

One evening the funeral home called me, they talked to me about Kassandra's ennoblement. (they had forewarned me about this before but I never thought much of it, as we planned to have her visitation on the funeral day. I got into thinking she'll be fine till then only a few days away) They said sometimes on babies it doesn't work well, meaning her body was preserving the way an adults would. They wanted us to have a visitation for her the next day, they said that her casket would need to be sealed soon and there would be no chance of a viewing for her funeral. This upset me greatly now I had to say goodbye again, before I was even ready. I had to call everyone up and make arrangements for that, a lot of close family had to travel a ways.

The next morning we got ready, Andy had decided he wasn't going. We had a huge fight, I so wanted him to be there thinking it was something we HAD to do. I thought this is his last chance to see her. After she died he left the room and didn't come back in for awhile till he was ready to pick me up to take us home. {this was all very hard to understand, his feelings were so very different than mine. Had I really understood him before I would have known that he was Ok with saying goodbye before she passed, I would have known that he was not comfortable around dead bodies. I would have never pushed so much for him to go that day. I guess I just wanted every chance to be with her before she left us for the last time. Now I know that everyone grieves in thier own way and dose things in thier own time. Now I feel so bad for pushing}

When I got there some were there but other's were not. They had Kassandra in another room with the door shut till we were ready. We waited for about 45min because some were late. I also expected some very very close relatives to come, but they didn't. I had to call to see why they were so late. I guess they hadn't planned on comming. I have no idea why they decided not to, but it hurt but I was really embarrassed for making everyone wait. Dad, Nick and I walked in first to see her. I was in awe I did nothing but stare at her the whole time while people were meeting her for 1st time. (except my parents and little sister who were in the cities for her birth and Xmas day.) A lot of people came, mostly family and a lot of friends, my MW and nurse came and some others but I really cannot recall who they were. After awhile I said my final goodbye and went home. The next day the funeral home asked if there was anything I needed out of her casket, I said no. They sealed it. She had her blankie a few letters, her hat, a baby book, stuffed bear, and a glass angel {now I wished I would have replaced the original blanket with her other one. It was the blanket that I wore on me for weeks prior to her birth so it would have my scent on me for her time without me in the NICU. I became attached to that blanket, it reminded me of her I wish I had it now. Her body would have been fine with another one for her blankies, her spirit is in heaven}

If I could have changed one thing from her funeral day I would have NEVER went to the salon. My hair was in bad need to get cut and I wanted to look nice for her funeral. I didn't have the energy to do it myself. I never though there would be an incidence, but I should have known better. They're always pressing to hear gossip up there. We live in a small community so most everyone knows everyone and usually word travels fast. Apparently some knew she was born but has no idea she passed or that anything was wrong and others had no clue on anything, but with alot of looks and whispers most everyone knew.

When I got there I was so relieved I wasn't being asked about the baby, she had no idea I was even pregnant (goes to show how long it had been since my last hair cut) She kept asked me queastions about Xmas, I said it was fine and I spent it with my family. She asked me what I was doing that day and I said I was going to a funeral, but I never said who's. { I just couldn't, it didn't seem real to me. I was still trying to wake up from this nightmare} Then she got on the new years subject asking what we had done, me not thinking I asked well what day of the week was that?? I think she thought I was crazy! She told me and I got quiet after I thought of it trying so hard to hold back my tears. I looked up at the other solonest who was shaking her head and trying to grab her attention. Because I didn't answer she repeated I finally looked at her and said "I was planning my daughters funeral, which I need to get ready for now so can you just finish cutting my hair" I put My head down as tears were rolling down my cheeks. I wanted to run out of there and never return, at that point I didn't care what I looked like or what people thought of me I just wanted to get out of there. {I guess god must have given me the strength to stay there and finish, because without it I know I would have eaither blown up on her or just left. Kassandra would have loved me no matter how I looked}

Kassandra's funeral was so peaceful, but hard. The service was just how Andy and I had planned out. I don't remember who was all there but there were alot more than I ever expected. I figured family and friends would come but thats it, but I do remember seeing ex-coworkers and friends there. And according to the guest book there were other people there that we didn't know. {its amazing how many there were to support us, and be there to recognize Kassandra's life} Nick's ECFE teacher video taped it for us, just incase someone had to leave in the middle of it, or if we ever wanted to watch it again and also for my sister in Washington and my brother in Vegas. (both of which were able to make it for her birth and 1st day in the NICU, but had to leave MN right after she passed) Which I understand and am not upset about, I was very thankful that they had the chance to meet her.

I had a friend sit behind us to take Nick out of the service if he got fussy but he didn't. Actually he was a little sweetie! He sat on my lap hugging me most of the time and rubbing my shoulder. Poor little guy had been through so much that last month. I had to leave him for over 2 weeks it hurt so bad. And with all the traveling and getting passed back and forth from our families, I feel so bad for him. He did get to meet Kassandra once for a few minutes (I was still in recovery and no picture was taken) so he was asking for his baby alot the days following her death. it was so very hard for an 18m to understand it all. On top of his mommy and daddy being very sad. So he cuddled alot in the days following. {now I wish we would have had pictures taken with Nick and Kassandra, and a family picture, we never thought about it at the time. But its something I've been longing for since after she passed. But I guess we should just be thankful that we got pictures of her. One picture I hold close to my heart is a picture of Kassandra in the NICU, it was taken at just the right angle so we can see the picture we had of Nick in her warming bed, so yea I guess I do have a picture of them}

Before the funeral I got a bulletin board from the funeral home. I covered it with pink baby material and posted some of her pictures and belongings. I also am a member of www.mommaville.com and through the pregnancy I posted updates on Kassandra. I asked my SIL Wendy (who's also a member) to print those out with every ones replies) I added it all to a 3ring binder-wow it was thick- and decorated the front with her name, dates and baby stickers as well as crosses. We brought that to the funeral along with a photo album of u/s and pictures of Kassandra. It all turned was passed around after the service, and gave those who didn't go to the burial something to look at till we got back. People were still reading and looking after the luncheon (which we had friends serve). Kassandra was such a cutie and definitely a hit! {it made for great memorials and memories of Kassandra, I'm so glad I though that up, and for Wendy to do all the printing and Jenny (my little sis), to do all the hole punching}

The burial sucked, it was soooooo very cold here in MN, the roads were icy and it was way out in the country. After the prayers were done we got alot of hugs from close friends and family before we headed back into town. We were advised against watching them lower the casket down because with an infants casket its difficult since they had to use ropes and not the regular device.

Well thats about it for now...

whew, if you made it though my last 3 posts you are a saint!

I guess after rereading all that and thinking I came up with a a new quote.

~~"think about what you had/have and not what you've lost"~~


My poor little Nick is ill tonight, he's having fevers again. please keep him in your thoughts and prayers.

Nick's feeling much better today!

However I heard some bad news today, and am quite upset about it. It has to do with my son. Usually I'll post everything on my journal, but this is something I feel should not go on an open board. I'm sorry. Please keep him in your prayers. (and maybe me too since I'm VERY upset about it all)

Here's some pictures of the kid's ornaments for this year. Sorry the quality of the pics are bad.

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These are the ones I picked out and has each kid's names engraved on all of them, plus 2006

Nick

Kassandra

Nevaeh

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The NICU has a parent to parent program (healing quilt), They set me up to visit with another parent who lost her son a few years ago. She sent Nick a really nice wooden tool set (he adores it!) and she also sent the girls these ornaments for Xmas. It was so sweet of her to do that!

Kassandra's

Nevaeh's

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Here are the Xmas stocking decorations I got for the girls (I got it on the after Xmas sale)



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This is Kassandra's picture ornament and Xmas picture frame. (babies 1st Christmas) Also the ornament I got from my Nephew for Xmas, I still have to have a pic resized to fit.







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Kassandra's Angel. This is what we got from the Ronald McDonald house last year, I brought it into the NICU for Kassandra. I left it with her when we left the cities and it was used as decoration during her visitation and funeral.


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I had a few extra I wanted to share from, my SIL the NICU and my aunt but the batteries died on the camera