Lucy's good dream

Here is an adorable video of Lucy from last night.  I wonder what she was dreaming about :).

Life As We Know It

Here are some updates on our lives.  Lucy had surgery on May 4 which you all may know.  She has hydrocyphallus.  A shunt was put in her head and they made an incision on the top of her right fontanelle, behind her right ear, and another by her belly button.  The biggest incision is on top of her head, they put the resevoir in there to help drain the spinal fluid.  It's on a medium high setting and the doctor can switch it with a special magnet if he needs to, modern technology=awesome.  The shunt will always stay in her, unless it fails and she needs it replaced.  We were lucky to have this caught in time before it damaged her brain.  We have no way of knowing why it happened, except it was most likely caused from her genetic anomoly.  I have read that a couple of kids had hydrocyphallus from a duplication they have on q28 so that pretty much solves my question.  Lucy is off and on oxygen through the day and on it through the night.  I luckily own a monitor to check her oxygen levels.  After so long after you rent it, I guess you end up owning it so that is nice.  After Lucy was out of surgery I met her at post of surgery area.  It's like a NICU with just curtains separating the patients.  Of course while I was there a child D Sat across from us and I saw about 20 doctors and Nurses rush to the child's bedside.  Luckily the child survived and they all cheered.  My heart was pounding out of my chest, while the nurse with Lucy tried to act like everything was ok so I wouldn't freak out.  Second time I have witnessed that, and I fear it won't be the last.  During our stay I made myself acquainted with the cafeteria and ate a bunch of treats.  They have an awesome cafeteria and I know I will be vegging out everytime I stay there.  I attended the sacrament meeting, it's just 30 minutes long.  As soon as I walked in the room I felt this overwhelming spirit.  It felt like the wind was getting knocked out of me, I began to cry while I was singing the opening hymn.  Watching children be wheeled in, and parents who are struggling.  It was testimony meeting, and before the bearing of testimonies one of the bishopric came up and spoke.  He talked about Elder Worthlin's talk he had given from years past.  About the horrible Friday with Jesus and how devasting it was.  And then came Sunday, the resurrection of Jesus.  He told us although we may be having our Friday, there will be a Sunday.  Of course I bawled and so did all the other people.  Listening to testimonies was inspiring.  One little boy kissed and hugged his mommy when she came back from bearing her testimony.  He hated seeing her sad, this little boy that looks about Dawson's age that was in a wheel chair.  I was really glad I could attend that meeting and how inspired I was by all the wonderful parents and children around me. 
I can't tell you how many years I will have Lucy, I can't tell you if she is mentally handicapped or not.  I can't tell you if she will ever walk or talk.  I just don't know the answers, only God knows.  I know this has been hard on my family, some have taken it even harder.  To you I say, Lucy came here for a reason and to help all of us.  Don't let this break you down, keep your head up, her Sunday will come and she will be healed.  As I type this Lucy is smiling in her sleep, she is a beautiful girl that has taught us so much and continues to teach us daily.  What makes us as a person is our Spirit.  Lucy won't be tempted by the outside world, and that is a good thing. 

I have so much to be greatful for, so many blessings have happened in my life.  I am surrounded by amazing people Family and Friends.  Some have come and gone and some have passed on to the other side.  I am greatful for all the many wonderful people in my life.  Life lessons are hard, but this life wasn't made easy for a reason, and it sucks but thats how it is.  I just hope to continue on striving to be better.  I thank you all for the love and support as always xoxo.

Update

Hello Friends, just wanted to give you an update on Lucy. She is 7 months old today and weighs 11 and a half pounds.  The results of her EEG came back and she doesn't have Hypsarrythmia anymore which is great news!  That stuff is horrible, causes development delays and so forth.  Her brain patterns are really abnormal though, which means she is very pron to having seizures.  She was having discharges in the brain that were showing signs of it.  Her head all of a sudden jumped from 0 to 50 percentile on the growth chart so we are concerned she has fluid building up in her head.  The doctor was going to get back with me about giving her a CT or MRI.  I had to put the NG tube back in her nose last night. The past few days her sucking ability was steadily declining.  The doctor thinks it's her body normalizing itself after being on the steroids.  Also, a possibility if the swelling is causing her to not want to eat either.  Last weekend Lucy started smiling again :).  I can't get her to smile, she just does it on her own.  I have heard a little chuckles out of her too.  I guess yesterday she made laughing sounds when Lucas and Dawson were laughing with one another.  Lucy must have want to join in too, which I could've seen that. 

How many appointments will Lucy been to the Month of April.  A whopping 14 appointments, luckily most of those are at my home.  She has seen her Pediatrician, Eye Specialist, Occupational Therapist, Physical Therapist, Geneticist, EEG Lab, Nurse Visit, Coordinator Visit. Ah, Im so tired... :) I am really glad she gets all of this help.  The Physical Therapist is coming Monday and she will have equipment for Lucy to use to help her sit up.  Lucy has been holding her head up more lately which is encouraging.  Im sure it feels like a big Bowling Bowl she is trying to move around.  Lucy has something called CVI (Cortical Visual Impairment).  Meaning structuraly her eyes were formed right.  Something in the brain is not triggering the eyes like it should be.  Most the time CVI can improve, which is good news.  Glasses won't help her, just therapy. She won't be able to see fully, and we will have to help her the best we can.  It's like she can see sometimes and other times she can't track at all.  We will keep working with her, and luckily the eye specialist comes out 3 times a month to help us. 

As a family we are doing well considering everything we have been through.  I was upset when I had to put the tube in last night but oh well.  It's expected to happen, at least she likes to eat baby food and rice cereal. Maybe when she is old enough she will take a cup? I am hoping to get tested sometime in the near future if I carry this chromosome anomaly.  I need to know because if I am it's a 50/50 chance it will happen which is a huge number. If not, then this happening again is no bigger odds than anyone else.  I don't plan on having more kids for a long while, but it would be good to know in advance to think of options for the future. Lucy is such a strong little girl, she give us courage through the hard days.  When we have good days I really soak it in, might as well right? Because a bad one is going to come and it will make that much more grateful for those good days. 

During General Conference, we were all hanging out around the TV and on our bed.  I was starting to feel a little sleepy, and then I hear the words Chromosome Abnormality from the TV.  Lucas nudges me and our eyes glue on the screen.  Listening to Elder Rasband's talk about his grandson was so humbling for us.  We both started sobbing, Lucas held me while we just bawled. My phone starts vibrating from Family and Friends asking me if I was seeing this.  Every night I would pray to Heavenly Father letting me know I am not alone.  Just to give me some sort of sign that he is there watching over us.  This talk could have came out any other time, but it was given at that moment I needed it the most.  As my sister Maryanne said to me he is aware of what is going on with us.  I have never felt such a peace and calm in my whole life.  It helped me not hold anger and to just let it go and be at peace.  One day will be different from the next, but my baby is here and thats what matters.  She has such a strong spirit, and people tell us that.  Sometimes they start to cry when they are around her, because you can feel it.  Maybe it's the Angels that surround her, because they do.  We all can feel them when we are with her.  

I know most of you aren't quite sure of what Lucy's condition means.  Neither do we really, we won't know how she is mentally until she gets older.  She obviously had delays, but she is trying her best.  And a lot of it is due to her low muscle tone, it's a workout for her doing things that come so easy for us. What is awesome though is that the Hypsaryythmia is gone.  The Neurologist said that usually it doesn't come back :).  That is something worth celebrating I think.  Bring out the Sparkling Cider! ;)

Life is crazy..

Hello world, my life has been crazy. A beautiful, scary, unknown, wonderous life. I could use so many other words to explain how I feel. Since I have blogged I have a beautiful baby girl who has a rare chromsome abnormality called Xq22-q28. And a lot of wording goes along with it. Honestly I don't think very many people understand what I am telling them when I explain it. I think the best person that knows what it is is my Mom haha. I use to think chromosome abnormalities were just the deadly ones like Trisomy's or the well known Down's syndrome. So many abnormalities are out there and people just don't know it unless they know someone or are experiencing it themselves. When Lucy was first born she was a little peanut 3lbs 9.5 oz and 15 incles long. It's a complete miracle this child was born alive. She was in the NICU for almost 7 weeks. The first couple of weeks were very up and down for me. Not being able to take your child home from the hospital is excruitating. I balled and balled when we got home, and it doesn't help when you are hopped up on pain pills. Also a baby had died next to Lucy in the NICU and it had me shaken up.
Lucy had all these tests run on here to see why she was born so small. The Placenta was small and her umbilical cord was smaller than the width of a pencil. She has the smallest belly button ever, I challenge anyone to show me a smaller belly button haha. Her tests were coming out good until one day the nurses say they had gotten some results and to talk to the Neonatologist. So, I get on the phone and Dr. Burgar tells me that she tested positive for a chromsome abnormality. I was so confused, and had so many emotions running. They were going to do a more extensive test called a Micro Array Essay to see exactly what it was. Almost 2 long weeks go by and then another one of the Neo's comes up to me and says they got the results. He takes a look at it and says really loud "Oh My Gosh I need my glasses". Me and my Mom are pretty much horrified as we watch him run out to get his glasses. He sits us down and says well I'm telling you something you already know. And I'm thinking I have no clue what is going on. So, I ask him and he really doesn't know. He is an interesting fellow, I like him but don't like him. I was so confused... I had to wait to see a Geneticist. I spent many days just having a smile on my face, and then I would run away somewhere and cry out of nowhere. It wasn't very often, but I had my moments. When we saw the Geneticist it was after the seizures started, those crappy seizures. Those seizures I invision in my head when I punch the crap out of the bag in Kick boxing class. She was doing pretty well and then those started and the crap hit the fan. Ah.. that is when I started to really lose it and just cry and cry and Lucas would just reassure me. Me and him have had to reassure each other through these tough times. Lucas doesn't like to talk about it, it's a guy thing. Guy's cope differently than girls, girls just pour out emotions. Guys say like two words and walk away haha. Not all guys but most guys are like that. My beautiful baby girl has some development problems we are trying to help her with. She is currently on steroids and a bunch of other meds. She is only on her oxygen at night starting this week. It's nice to see more of her beautiful face. She takes baby food now which is awesome. She won't drink a bottle, it's not going to happen for her again it just won't and thats ok. I dedicated so much effort and time to get her to drink her bottle. It was a horrible task... but I am stubborn and I got her to drink her bottle. I feel like a feeding expert now, I think I could feed any baby a bottle now. Lucy still would be taking a bottle now if it wasn't for the seizures. But, that is life and life can suck. For the most part life has been good for me and my family. I know some people have said I wouldn't change my child. Nothing is wrong with your child or my child that has special needs. But, they are wrong. Our children do have something wrong with them, it's life and I would change my child if I had the choice. To want your child to be healthy is not selfish or wrong, we don't want our children to suffer. I don't care about myself, I just worry about a child hurting. The child I carried for 9 months and didn't know if she would make it to birth. This child who is tougher than you could ever imagine all 10 lbs of her. She is such a strong fighter, and that is why I am here to be an advocate to help her. She does have something wrong with her, I know this and that is why we have many doctors and programs to help children like her. Denial is hard for parents that hear that they have a child that has special needs.
My daughter Lucinda Jane has an extremely rare chromosome abnormality that doesn't have a name. She has a disability and is a special needs child. She needs to be fed through a tube to live and on a low flow of oxygen. She has Infantile Spasms with hypsorrythmia. Hypsorrythmia can lead to something horrible if not fixed. She is on Prednisolone to help stop them. She acts like a newborn and cannot lift her head. She cannot track objects very well because of the hypsorrythmia. She has up to 10 appointments a month with doctors or a specialist of some sort. Now, if I were to ignore what Lucy has she would not get help that she needs. She may lead a good life one day because we took action. Because, I acknowledge she does need help. That is why we have these hospitals, we want to help our child's problems so they can thrive. I hope this makes sense to everyone, but this is how I see it. I love my baby girl, and I want her here and I want to help her the best I can. I do not want her to suffer, she is fighting so hard to be here so I need to fight back and say "Oh no you didn't" :). This is my life, I am so grateful she is here now that is what I wouldn't change. I just want to help her be happy and smile again, that is a goal worth striving for. Because, she gave the best smiles. I love my son, who I will just hug and hug because I am so grateful for him. I love that little guy so much, he has my heart in his hands. He is a beautiful little boy who will have the girls chasing him one day. I love my children and am so grateful they are here. I love them with all my heart. Being a parent is such a blessing, and I am so greatful I am one.

33 weeks 6 days

Today was another growth measurement. Those are scheduled every 3 weeks. Lucy measured 6 weeks behind on her Abdomen and 3 weeks behind on her limbs. Her head was on schedule and blood flow to the baby looked good. My Perinatologist told me that he is scratching his head on this one because this type of situation doesn't typically happen. When I was 25 weeks blood flow was horrible and stayed looking pretty horrible for a while. Well, it has changed and the blood flow is now really good. Usually it's the other way around because the bigger the baby gets the more the placenta starts to fail. In this case it hasn't and has improved. My Perinatologist told me he thought I would've had the baby already because of how bad things were going earlier on. This is a situation that has changed dramatically, and for the better. As long as she is still gaining some weight that is good. She now weighs 2 lbs 14 ounces, 3 weeks ago she weighted 2 lbs 5 ounces. So, she has gained 3 ounces a weeks since then. A baby that doesn't have growth restriction is supposed to gain an ounce a day. She is very small, but she has gained some weight and that is good. My fluid levels have increased and I have plenty of fluid. I guess resting most of the time has helped her. And I believe all the prayers,fasting, priesthood blessing, and along with others that have put my name in the temple really has helped. I have my next appointment Thursday with My OB. I now have 3 appointments a week to make sure everything is ok. I have no idea when she will be born. The longer she is in the better though, my doctors really can't say how long she will go. They just want me to go as long as possible since she is so small. As for now baby can bake longer and that makes me happy :). Thank you all for the continued love and support.

30 weeks

I am now 30 weeks 3days, and I am very grateful for that. Last Tuesday didn't go so well for me and have had some tough days. Lucy is now 5 weeks behind on her body measurement. Her head is still on schedule but that is good. I saw a different Peri this time, my other one is out of town. This one was telling me I should get an amnio because of chromosome problems blah blah blah. Because I guess in a 2 vessel cord it has been known to have a chromosome problem. The weird thing is that at my 20 weeks ultra sound I was told I had a 3. I have wondered if it was dying off around that time and went to a 2? Either that or the tech messed up. You see up above in the cord shows a 3 but then it died off and where the baby gets nutrients she has 2. I guess thats what happens for whatever reason. I of course have done research to know about chromosome problems. The Trisomy problems which are basically fatal. So, that is really encouraging.. But, right now I feel better because the indicators of that aren't what she has shown signs of. A baby that is symmetrical is more likely to have those problems than an asymmetrical baby which is what Lucy has. Asymmetrical shows that baby is just not getting enough nutrients and that could be a placenta problem. I talked to my OB about the amnio and he told me what it all means and that he thinks I shouldn't get one. I was glad I called him he called me back and talked to me for 10 minutes about it and it made me feel better. Seriously again I can't express how great of a Doctor he is. Sometimes when I see other girls talk about their OB I am thinking seriously your Doctor is dumb. I don't tell them that, but seriously I think it haha. My OB is pro vaginal birth too so we will try for that first unless Lucy is in distress. I know of Doctors that just want to have a c section all the time and it's like why? When I had Dawson it was such a great Delivery, I was seriously blessed. So anyway, the Peri I saw actually gave me some percentage of when he thought I would deliver. That was the only good thing about that visit haha. He said that he thinks at 34 weeks I would deliver. But, he said it could be earlier .. I may go in one week and they may wheel me off to delivery. I guess maybe I should get a bag ready? If I could bake Lucy till the first week of September that would be awesome. If I could haver her vaginally that would be awesome. If I can't then I won't, I want to do what is best for baby. I have been resting a lot and feel like the laziest person ever. I do get out of the house from time to time but don't do it for very long. I pretty much just hang out in my parent's basement. Luckily they have put up with our mess and I feel bad. When all is done I will be more tidy I promise. On a side note, Lucas is getting close to having our house done. Carpet goes in next week and we just need to do a couple others things and we can move in. He was supposed to go to El Salvador but that trip goes to the end of August. Not a smart move in case Lucy comes. I am glad he will be home, it gives me peace of mind. Thank you all for the prayers, it means so much to us :).

Our little fighter Lucy

Here is Lucy's Journey so far, I decided to finally write down exactly what is going on for those that don't understand.

I am 29 weeks 3 days pregnant with Lucinda Jane. I count everyday because everyone one of those days count. Lucy has been a fighter since day 1. She was a threatened miscarriage at 9 weeks. I bled for a week but doctor said she had a strong heartbeat and said that he thought she would be ok in the end. I honestly can say that I have the Best OB, he really knows what he is doing and lets me know exactly what he is thinking. I knew the moment I found out I was pregnant that this baby was a girl. I had a dream about her before I was even pregnant with Dawson. In my dream when she was handed to me after delivery I remember feeling a sense of relief. I never could understand why in this dream I felt that until now. At my 20 week appt. everything was looking good so far. Lucy looked great and was a week behind in measurements but that wasn't a cause for alarm. My doctor saw me the next week and everything was looking good as well. He said that next appt. he would check and see if everything was ok with the heart since I guess the ultra sound tech didn't get a good look. Next appt. I had no idea that I was going to have to deal with some heart breaking news...

At my 25 week appt. Dr. Farley takes me to get an ultra sound. He is looking around at the heart but still can't get a good look. I notice he was measuring the head and the limbs and the rest of the body. I notice looking over at the monitor I see that it says 21 weeks.. I didn't say anything and figured everything was ok. Once he was done he tells us that he had a cause for concern because baby was almost a month behind in measurements except her head was on schedule. He also mentioned that he still couldn't get a good look at the heart and needed that checked as well. He took me to his office along with his head nurse and they called the Hospital and scheduled me an appt. to see a Peranatologist. He then takes me back to get a non stress test for 15 minutes to see if Lucy's heart beat was ok. As he is doing this he tells me he might take me over to the hospital because he was worried that she may have to come out. He then tells me the worst case scenario which is that her heart may not even be ok and that it would make things easier for us if we needed to decided to fight for the baby or not. All of this was very overwhelming.. Luckily baby's heartbeat was ok and he decided to wait for the appt and see what happens. That was the longest weekend of my life!

My appt. was that following Tuesday, I was sweating bullets when the heart was being looked at along with everything else. The Perinatologist came back after the tech was finished and tells me that the reasoning for the IUGR (Intrauterine Growth Restriction) was because she had a 2 vessel cord. Which is SUA (Single Umbilical Artery). An umbilical cord is supposed to have 2 arteries and a vein, mine only has one artery. Sometimes the growth problems can happen because of this. Some people don't have any problem at all when this happens. He tells me that as long as her brain is growing that is good. I am monitored by him every Tuesday morning and I have a doctor appt with the OB every other week. Once I hit 32 weeks I will be seen twice a week. I have looked up lots of outcomes on the matter and it is good and bad. A baby that has SUA has a higher chance of being a miscarriage. Our little Lucy is a fighter and didn't give up when that happened. A girl has a higher chance to have SUA along with the growth restriction, I don't know why but it happens I guess. Little Lucy had her name before I was pregnant with Dawson, we have always known we would have a Lucy.

I had known years ago I had an ancestor that was born that wasn't supposed to survive. She was born at 32 weeks and fit in a shoe box. I believe she is my great great grandmother. She was fed with an eye dropper and somehow she survived against all odds. Medicine wasn't good back then and she was in medical records in Utah even because of her amazing survival. Guess what her name is? We just found this out a few weeks ago. Her name is Lucy, Lucinda Jane to be exact. And that was what we were going to name our little girl.

As for now each week is wonderful, we don't know which we she will come. It's been a few weeks since a growth scan has been performed and this upcoming Tuesday is our next one. Steroids will be admitted soon to help her grow. My doctor was more optimistic when I saw him last Thursday. He would like me to get to 35 weeks if possible. She will not be a full term baby and will be smaller for what week she is born. If she is born at 35 weeks she probably will be 4 lbs. I have my moments of anxiety, I have to monitor her movement every day because risk of still birth is higher in these babies. Yesterday I panicked and went to the clinic to see if she was ok. I am trying to remain strong as much as possible but I have my off days. Sometimes I don't think people understand how scary this is. Some people do and I appreciate those that have been there to help me.

My parents have been a great support team and have been so helpful in my time of need along with helping with our house that we have been trying to move in. I know Lucy is a fighter and I am grateful for that. She will be small when she is born and maybe have a NICU stay it all depends. Everything happens for a reason and I am grateful that so far she is hanging in there.

If I seem like a hermit right now staying at home I need to be for the most part. I want people to know that if I can't be there for family functions I apologize but this is why and I need to be resting as much as possible. Next Tuesday couldn't come fast enough to see if Lucy has grown. I prayed to Heavenly Father to at least get me to 30 to 32 weeks. So far he has helped and I know that everyone who has prayed, fasted, and by getting a blessing has been a big factor to help her grow further.

Thanks for reading :) and Thanks for your kindness during this time.