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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
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 Instead she's quiet, withdrawn and dosn't even think I need to take it easy.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.
MONDAY, SEPTEMBER 12, 2005 12:51 PM, CDT
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
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 :( 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
-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.
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.
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
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!!
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.
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
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!!!!
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.
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.
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:(
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!
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.
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!
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
FRIDAY, DECEMBER 16, 2005 06:59 PM, CST
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.
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.
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!!!
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!
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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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.
This is what I'm feeling. I found this on the MISS Foundation boards last night.
[b] MY WISH LIST[/b]
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
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, 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.