the past two days

December 26th we had the Chaplin at the hospital come and give our little olivia a baptism before the morning of her surgery. it was really beautiful. she enjoyed her dress once we had it draped over her and tucked around her she fell asleep and continued to stay asleep the whole time ... aunt terry was there to watch it and Chris video taped it... of course i cried .

at 815 am olivia was taken down to the O.R to have her first stage of her operations done. chris and i held each other close and cried early that morning because really we didnt know if that would be the last time we saw our baby girl alive.chris's mom dad sisters and brother and grandparents came to stay with us during the surgery and so did uncle pat and aunt di. the majority of the day was waiting and sitting and pumping for me.
i felt like the day went by pretty fast and it wasnt until almost 7pm where we able to see her. i think the hardest part of it all was that i couldnt just go and see her like i was when she was in the NICU. through out the day i did have moments where i was really anxious and felt afraid but then an update of how it was going would come to us and everything was going good. she got through the surgery and was now ready for us to see her. it was scary and it broke both of our hearts to see our little baby layed out and cut open. chris asked to see under the cover and there it was a tiny beating heart.... our 4 day old baby girl was wide open and we could see her heart ...

we had our break downs and chris and i cried... we both take turns breaking down. it seems to work for us... i dont think that seeing a baby let alone your own child go through this should ever have to happen but we know that this is what needs to be for her to survive and hopefully come home with us... knowing that this will be a long journey makes us nervous but we are hanging in there... she has been fighting and staying pretty stable.

(24 hours after surgery)

she is our little warrior! every day she amazes me i see her little face and her tiny little body and just marvel at her strength she is my hero. 

even though when the phone rings i start shaking and when an alarm goes off i jump i think that i really dont know what i would do without my baby girl... she has forever changed me.

(48 hours after her surgery)

i love you miss Olivia 

your mommy 

<3

Olivia Emma Grace!

so Monday the 20th we started our journey to induce labor and safely get our little miss olive out...
at 8pm they placed cervidil a med that helps soften the cervix and get the contractions going. this was more uncomfortable than anything i wasn't allowed to really walk around or anything but Chris, aunt terry and i sat around and relaxed as much as possible.  i also had an IV line placed that was hell.the placement was bad and uncombable and i was very stressed out about it ... finally they took it out and tried again. they blew the second vein on top of my hand so they had to do it on top of my arm. this was a lot more comfy and i could deal with it a lot better

"ok so they are going to do the cervidil in about 5 min and then i am going to hang out and try to sleep... unless i am one of the lucky ones that dilates right away with it then morning they will start the pitocin. so i may not have any real updates until morning! thanks for all the love"


the cervidil didn't do to much it did soften me up a tiny bit but not really enough to do much with ... it was very disappointing to tell you the truth. but i knew that this could possibly take a bit to really get things going. at 530 am i woke up Tuesday morning feeling pretty happy and ready to start the long day and try to have a baby.

"I'm awake ... feelin pretty good"


the cervidil was in place for 12 hours and at 830am Tuesday they removed it and allowed me to eat some food and take a shower. it was really nice to feel refreshed and ready for everything. 
i also had a few contractions over the night but nothing to eventful went on.


"there going to give me a little food and take the cervidil out... and start the pitocin at 830. ive been having contractions but not to bad :) im feeling pretty good still... but my ass keeps fallin asleep"

so they started me on pitocen and slowly bumped it up ALL day long... they also did a thing called a folly bulb where they take this wand looking thing and it has a balloon on the end of it that they fill with a saline solution and its inserted into your cervix and has tension on it to slowly force your cervix open.... it was HORRID! (at one point i was so weak in my legs i went to the bathroom pee'd all over the floor and blood was everywhere ... it looked like a murder scene) 
after the bulb was pulled out gently "ripped out of my vagina" i was dilated to about a 4-5cm depends on what doctor was checking me... and yes the pitocin was still flowing all day. it was at the highest setting and still no progression at all. 


"update from me! i am 4-5cm still but more effaced and olive is making her way down. i am in a lot of pain but seriously all i want to do is hit the nurse not because of the pain but because i just dont like her. but hopefully olive gets here i need a shower and a good night sleep"

this was when they decided that they would give me a rest and let me shower. they took me off the iv's and let me eat.


"operation get baby out has been temporarily derailed for the time being... i am doing great i got a shower and i am going to eat... i am at 5 almost 5 1/2 cm but even with the pitocin up as high as it goes i am not getting into active labor ... so they are giving me some rest baby girl is doing great but being a pain in my ass lol... ill update later if possible"




Over night nothing happened i had a few natural contractions but nothing major to make anything happen. it was very disappointing....

Thursday morning was when ALL the fun happened... yes Thursday!!! they started me back on the pitocin and every thirty minutes they bumped it up and it wasnt to bad but then again i am comparing it to labor. this didnt really do much at all to tell you the truth and this is when i thought that the baby would never come out !!!
around one o'clock they decided to break my water. this was horrible only because my body was so sore and was tired from the day before. after doing so my body decided ok lets get this baby out. i had one contraction after another ... this was when i started to freak out i went maybe an hour before crying and begging them to take her by C-section because i could not take anymore pain. at about 230 i was at a little over 6cm and i decided i wanted an epidural. i felt horrible that i got it at first but really i shouldn't have. the first one they gave me didnt work they placed it wrong so only my legs and a small part of my belly was numb. so they had to give me a bunch of meds to figure out what was going on and on top of this i was FEELING EVERYTHING!!! so a new doctor came in and had to remove the first one and give me a new one. this one worked very well ... and thats when i could really feel that Olivia was coming... i continued to say she is coming out i know she is... and they where all telling me she has a bit of a ways to go and i told them NO she is coming.

so they checked and sure enough baby olive was coming. there where a little less people in the room then i thought so it was nice. they had me do a practice push and i am a good pusher i guess because with that push she was crowning. so everyone got in place and i gave them about 4 good pushes and out popped the little Olive! it was such a wonderful relief to get her out my whole body had this calm.
she started to cry right away and it was the best sound ever i cried... they even let Chris cut the cord it was so much more than i hoped for. and to top it all off they even let me hold her!!!! my 6POUND 1OUNCE baby girl was in my arms! and boy is she BEAUTIFUL!!!!!!!!  


after all this they had to manually take out my placenta because the cord had broken off... this wasn't an issue because i got to hold her.
but everything went fine after that ...


i want to thank Aunt terry and Chris and all the wonderful nurses and doctors who helped make this all happen! 

OLIVIA EMMA GRACE WAS BORN ON DECEMBER 23 @ 1510 <3


and she is beautiful.

I'm not happy.... I'm in pain... i want to be done... i don't want this to be complicated.....
why is it so complicated.... i had a plan.


I'm sad... I'm upset... and again tonight i am feeling alone.
Olivia i am sorry, i wish mommy was happier for your sake... i wish i wasn't so terrified and upset all the time.

god send me an angel...

So for those of you who dont know Friday night i went in to get checked out... all day (thursday) i had pressure and tightening  in my belly. i shrugged most of it off and tried not to let it get to me. well friday early morning before i was going out for black Friday i started to get worried the pain started to come and the contractions started to seem like they where coming in a pattern. and to top it off i could feel my blood pressure going through the roof . so i drove myself to the hospital at 230am . i had chris talk to me the whole time there.
When i got there they put me on the monitors and took blood and urine... my bp was some where around 145/95 where usually its been close to 118/78 so this made them concern.... at this point i was having contractions and feeling pretty crappy.
so they ordered a 24 hour urine test and asked a lot of questions and this is where they made their decision to keep me....
SIDE NOTE: i pride myself on the fact that i am honest with people with things regarding my past and my feelings so if i cant be honest here then i am not being who i am .
 
When the doctor asked me if i was ok.. (i was crying on and off while i was being checked out) i told him no. because i am not ok. at all. i dont want anyone to think i am ungrateful because this isnt the case. i have a lot of family and friends who check up on me and love me but i am not ok. i am breaking down and losing my grip on all of this. i am terrified and sad. i am angry that this has to be so hard. im heartbroken my husband has to miss this time. i feel guilty for wanting people to stop what they are doing just to be with me. i feel like i am in the way and burden the ones around me... i feel horrible neglected at times... i feel homeless and unstable..... i talked to the doctor about my feelings of depression and the fear that i may neglect myself which would be neglecting Olivia because of how far from happy i feel.

This all was a big reason they held me over the weekend i was having horrible panic attacks and it was not good for me or the baby. they where worried i wasnt getting the rest i needed either so they kept and eye on me.
As far as olivia goes she is doing good and is safe. i am not dilated and my cervix is still thick and closed. but when i get to worked up i get contractions. they are seeing me a few times a week now and are sending me to a special program for expecting mothers and new moms suffering from depression.

 Coming home, honestly i didnt want to leave. i felt safe and i felt like i didnt have to worry about anything. every so often some one would come in and make sure i was ok and talk to me and i could say i am not doing good at all and they would listen and stay as long as i needed them to. i didnt feel like i was in anyones way ... but today when they decided to release me i panicked and cried... in a way i felt like this validated that i was in the way and it reminded me that i dont have my own safe place to curl up at. Chris will be home the tenth and i keep saying to myself less than 2 weeks and i will be with him and then i can breath and he can hold me when i feel like this.

Well thats what my weekend was like.... i wrote this to write down my feelings and how this weekend was to me... but please know that i am grateful for the friends and family i have and the new friends who where worried about me....

I leave here saying and praying "GOD please send me an angel, please send down the strength to make it through this...please help dry my tears and calm my worries and fears... and please watch over my little olive and i " amen

dear olivia

dear my precious sweet baby girl,
tomorrow is thanksgiving and i would like you to know how thankful i am to have been blessed with you. I know that if i had it my way you would have a whole heart but i am coming to a peace with all of this. you baby girl are very special! and i love you.
you are going to be amazing and perfect in every way. i dream about how you are going to be such a strong young woman.
Monday i met with another young woman who has the same heart condition you do. it was very nice to get to talk to her. And i hope that one day you and Jeni will be close!
I adore you my pretty baby. daddy will be home in two weeks and then the hunt is on and we will find us a happy home for you , daddy, sissy and mommy! <3

on Saturday we went and got a 3d ultra sound done and we got to see your beautiful face! here are some of those!

 the last two are really funny to me auntie Cami started to talk to you and you didnt like that all! but i promise you i will make it my mission to keep you happy and calm as much as mommy can!


love you little miss olive!

always your mommy

non-stress test

miss olive had a rough day ... so she failed the first half of the non-stress test... she wasnt moving her heart rate stayed at about 130-135 but little to no movement. so they gave me ice water to see if we could wake sleepy pie up and no dice... poor baby just got hiccups...so they waited a while and then decided to buzz her... it is this thing that looks like a massager and it makes a loud sound and vibrates my whole belly... this woke her up for a short while and she moved and her heart rate at one point did get to 160 so this was good for them but this was at the end... they are hoping that baby girl was just tired and thats it... but i have another appointment on Thursday and i am pretty sure they are going to do a full work up.. oh anticipation...

also Chris's dad found out that he has cancer :( 

god this year needs to be over

grumpy pants

i woke up today in  a bad mood.. well seriously how long does it take to make a fucking choice either we can go to this base or not... everything is taking so fucking long. i dont even feel close to my husband right now because every time i talk to him i get angry that he is not here i know its not his fault but i cant help but be angry. i am thankful for the help that the military provides for us but it is hard to keep it together. i cant even set up for our baby. i have no home and all my shit is in boxes.
i need Chris here. i'm tired of being alone.

i got my hair done today...

i needed a boost... i feel ok but i feel a sad spell coming . so i am hoping this peps me up a bit and holds it off for a while. little miss is moving a lot and her stress test was really good well at least thats what the nurse said!
she was moving so much the whole time lol.

here is my hair:

baby shower and madness

so yesterday was our baby shower...
my lovely sister in law threw it for me. it turned out really nice. well at least i think it did , I've only been to one other and i didn't really even stay that long to see what goes on.
all day i had to choke back tears. by the end of the day i was panicking . knowing baby girl is going to be here very very soon makes me nervous and scared plus there is still no orders nor house... or husband. but i will share a few pictures from the event ... most of them i look horribly fat because of angles and others are blurry ...
but don't get me wrong it was a really good day and i am so thankful for the gifts and awesome things little Olivia got! she is already so loved!

there where a lot more i am just to tired to post them all hope you enjoyed lol :D

why did i even get out of bed today?

i ask myself this a lot lately... i realize i should be staying positive and i shouldnt be feeling down i mean i do have family who are helping me through this but seriously ... seriously my life seems so lonely and empty right now. i miss my husband, he is my best friend. i miss having lunch with him i miss waking up with him ... i miss just being held by him.
Olivia has been super active and it makes me wonder... will she be like this when she is out here in this world or will she just lay there? its hard to even be close to her right now. when all i want to do is cry i feel like talking to her and whatnot is just not good. i dont know.
i should have just staying in bed all day..

where do i pull strength from now?

today i got this message:

Christopher Davis October 29 at 7:51am 

Travis said no to me due to manning issues. so no stanford either. the next base they are looking at is edwards. that means no custody of evelynn either. I was just on the phone with the people and the lady was laughing at me. I called the shirt and he got incontact weith the guy in charge. the shirt is going to call him directly everyday until it is complete. i tried to explain my situation and i had to stop and calm down because i was yelling at them. so that is why the first shirt got involved. our hands are tied. for now. the only thing we could do is just have you stay with stanford and i will take leave to be with you when the time comes for the baby. I love you baby and I am sorry about the military. it is good and evil at the same time.

i am terrified ...lost... losing faith...ANGRY....sad...any negative word you got feel free to add it in....

what do we do? how do i do it here alone? how does chris make it out there alone from us? 

Is this your plan GOD? to tear a broken family apart? please tell me how to do this... 

the visit on oct 19th & 20t

OCTOBER 19TH

So I had to do a 24 hour urine test... yuck. its to test for pre E, I will get the results soon next week I hope...I also did a glucose test. I really hope I passed it because that drink was TERRIBLE! I got the whooping cough and flu shot... and had two blood draws. this appointment went well I would say.

as for complaints I don't know if i have expressed how terribly uncomfortable i have been these past weeks have been but i have been having a lot of issues in my right side... well they said it can either be: 

A.) I have a small rib cage and it is the stress of the baby pushing up to make room ......or 

B.) I have shingles... yes shingles. i have a rash on my side and i think it is from having super sensitive skin but they said it could be shingles thankfully it is getting better with this cooler weather we are having . 

The other thing that the doctors said is that they are pretty sure i will not make it to 40 weeks... they where not very clear as to why this is but they said they really want me to make it to 39 weeks. that means an Xmas baby. my next appointment is next week so i will be sure to find out why this is. 

As for the appointments they are every two weeks now and i am no longer staying in Oroville. i am staying with family in Fremont which isn't very far from Palo alto. Also the last few weeks in December i will be at the Ronald McDonald house or at a hotel living until she is born. i guess the trip across the bridge is to much.

OCTOBER 20TH

I had three appointments this day:

Fetal Echo for Olive: 

everything went really well... as far as i know Dr. Hanley had an older report on who i was and what was going on. Dr. Tacy the one who does the echo said that the hole between the left and right side is getting great blood flow across it and that it looks like its doing very good. i asked about having the cath procedure done and she said that she doesn't think that olive will need one for this! so that was really good news for me it really made my day :) ... we talked a lot about different things that can happen and what was some what to be expected and i really felt good for the most part. 

Ultra sound:

My baby girl was 2 pounds 9 ounce!!!! they said it is on the smaller side of the spectrum but nothing to worry about... at 23 weeks she was only 14 ounces , so in that little bit of time she gained that much !!!!GROW LITTLE OLIVE GROW!!!! everything looked good and her heart rate was steady and normal i believe it was 130bpm ... they gave me a few pics they where not as clear as the ones before and they are a few head shots but i haven't uploaded them yet but as soon as i do i will get them on here. 

Echo for My Heart:

Was very uneventful. they didn't really share with me about what was going on and if they seen anything to worry about or if my murmur was still there or if it was worst or what.... i really wish that they would have said something but they said when i go to my high risk ob that they will talk to me about what they found. 

So totally unrelated to these appointments, I've been feeling really self conscience about my appearance. i feel like i look just fat and gross... and i miss my husband. i hope he gets here soon. he talked to head quarters and we should know by the end of the week what is going on hopefully he can out process in less than a week and get here asap so we can get settled and feel like we have a home again... i think i will be a lot happier then.

stanford and getting away for a couple weeks

we took a bus trip to so cal this past week to our friends bonnie and bobs for a week it has been very nice and relaxing... and next week we will be in the bay for a week...
Stanford is the 20th and 21st. lots of pokes and ultra sounds and test.
i will keep you updated and maybe put up more details about my trip to so cal and what not.

facts about HLHS

 

Hypoplastic left heart syndrome

URL of this page: http://www.nlm.nih.gov/medlineplus/ency/article/001106.htm

Hypoplastic left heart syndrome occurs when parts of the left side of the heart (mitral valve, left ventricle, aortic valve, and aorta) do not develop completely. The condition is congenital (present at birth).

Causes

Hypoplastic left heart is a rare type of congenital heart disease. It is more common in males than in females.As with most congenital heart defects, there is no known cause. Approximately 10% of patients with hypoplastic left heart syndrome also have other birth defects.

The problem develops before birth when there is not enough growth of the left ventricle and other structures, including the:

• Aorta -- the blood vessel that carries oxygen-rich blood from the left ventricle to the entire body
• Entrance and exit of the ventricle
• Mitral and aortic valves

This causes the left ventricle and aorta to be incompletely developed, or hypoplastic. In most cases, the left ventricle and aorta are much smaller than normal.
In patients with this condition, the left side of the heart is unable to send enough blood to the body. As a result, the right side of the heart must maintain the circulation for both the lungs and the body. The right ventricle can support the circulation to both the lungs and the body for a while, but this extra workload eventually causes the right side of the heart to fail.
The only possibility of survival is a connection between the right and the left side of the heart, or between the arteries and pulmonary arteries (the blood vessels that carry blood to the lungs). Babies are normally born with two of these connections:

• Foramen ovale (a hole between the right and left atrium)
• Ductus arteriosus (a small blood vesel that connects the aorta to the pulmonary artery)

Both of these connections normally close on their own a few days after birth.
In babies with hypoplastic left heart syndrome, blood from the right side of the heart travels through the ductus arteriosus. This is the only way for blood to get to the body. If the ductus arteriosus is allowed to close in a baby with hypoplastic left heart syndrome, the patient may quickly die because no blood will be pumped to the body. Babies with known hypoplastic left heart syndrome are usually started on a medicine to keep the ductus arteriosus open.
Because there is little or no flow out of the left heart, blood returning to the heart from the lungs needs to pass through the foramen ovale or an atrial septal defect (a hole connecting the collecting chambers on the left and right sides of the heart) back to the right side of the heart. If there is no foramen ovale, or if it is too small, the baby could die. Patients with this problem have the hole between their atria opened, either with surgery or using heart catheterization.
(olivias ductus arteriosus and foramen ovale are both very narrow and most likely need the procedure about following right after birth)

 

Outlook (Prognosis)

If left untreated, hypoplastic left heart syndrome is fatal. Survival rates for the staged repair continue to rise as surgical techniques and postoperative management improve. Survival after the first stage is more than 75%.
The size and function of the right ventricle are important in determining the child's outcome after surgery.

 

Treatment

Once the diagnosis of hypoplastic left heart is made, the baby will be admitted to the neonatal intensive care unit. A breathing machine (ventilator) may be needed to help the baby breathe. A medicine called prostaglandin E1 is used to keep blood circulating to the body by keeping the ductus arteriosus open.
These measures do not solve the problem. The condition always requires surgery.
The first surgery, called the Norwood operation, occurs within the baby's first few days of life. Stage I of the Norwood procedure consists of building a new aorta by:

• Using the pulmonary valve and artery
• Connecting the hypoplastic old aorta and coronary arteries to the new aorta
• Removing the wall between the atria (atrial septum)
• Making an artificial connection from either the right ventricle or a body-wide artery to the pulmonary artery to maintain blood flow to the lungs (called a shunt)

Afterwards, the baby usually goes home. The child will need to take daily medicines and be closely followed by a pediatric cardiologist, who will determine when the second stage of surgery should be done.
Stage II of the operation is called the Glenn shunt or hemi-Fontan procedure. This procedure connects the major vein carrying blue blood from the top half of the body (the superior vena cava) directly to blood vessels to the lungs (pulmonary arteries) to get oxygen. The surgery is usually done when the child is 4 to 6 months of age.
During stages I and II, the child may still appear somewhat blue (cyanotic).
Stage III, the final step, is called the Fontan procedure. The rest of the veins that carry blue blood from the body (the inferior vena cava) are connected directly to the blood vessels to the lungs. The right ventricle now serves only as the pumping chamber for the body (no longer the lungs and the body). This surgery is usually performed when the baby is 18 months - 3 years old. After this final step, the baby is no longer blue.
Some patients may need more surgeries in their 20s or 30s if they develop hard to control arrhythmias or other complications of the Fontan procedure.
In some hospitals, heart transplantation is considered a better choice than the three-step surgery process. However, there are few donated hearts available for small infants.

sorry it took so long...

"Optimism is believing things will get better. Hope is faith that things will get better. Realism is knowing things won't  get better, so just do what you can."
(this quote really hit my heart today ... not fully sure how to explain it but i thought I'd share... i am a realist most of the time and i am really working on being more optimistic and hopeful for my daughters future)

well first off i would really like to take a moment to say a little prayer for seven warriors that lost their battles this week with a CHD. Restin peace ♥ Ewan ♥, ♥ Kaitlynn ♥ , ♥ Doug ♥ , ♥ Jessica ♥, ♥ Tim ♥, ♥
Caleb ♥ and ♥ Alexander ♥..

please god open your arms to these wonderful little ones. please give peace to their families and let them get some rest in the weeks to come .... amen



OK so Stanford....

SEPTEMBER 28TH

i met with the high risk obgyn and got to meet Dr drizzen and his help and they where all very wonderful. they did a lot of test and asked a lot of questions. the doctors there want me to get out of bed and walk around but they told me it will be a fine line because they need me to pay attention to my body and make sure i am not over doing it.. they are worried because of family history and my size that i will develop a blood clot and they really don't want that to happen. we also talked about my heart murmur. up until that day i never thought about the fact that in a way it is a DEFECT and i am a LINK to my daughters heart issues. i am trying hard not to blame myself and in most days i am completely aware that it is not my fault and i didn't do this to her this isn't something i chose to give to her. they are going to do an echo of my heart and find out where and what it is. i also have to do a 24 hour pee test YUCK! i have to pee in this cup thing and then pour it into a jug it just grosses me out !!! and when i go back on the 21 i will be doing the glucose test. i am a high risk for gestational diabetes because of my family so they want to make sure that's going OK too... and the blood test ugh... i hate getting blood taken I HATE IT! but i will suck it up for sweet olive she will have to go through way worst!

i also met with my social worker Allison she was very sweet and it was nice getting to talk to her and she was helpful to explaining what she was there for and what her job was :)

THE 29TH

this was the day i met the famous DR HANLEY (he will be doing olives surgeries). he was late by like 20 minutes but seriously this man is busy... he talked to me about olives heart and that they still think that the valve that needs to be open is going to give us a bit of a run for our money and that she will be monitored very closely in the weeks to come and when she gets here most likely almost 85% sure she will be rushed away so they can make sure that it is open and stays open. when he was talking to me about this  i choked back my tears and tried my hardest not to break down in front of him. i didn't think talking to him would be so hard but all i could think of is that this man has the power to save her life... and i have to trust in this stranger to cut my baby open. i was completely flooded with emotions. when we left the building i broke down and cried to my dad... i am glad he went because he offered a hug when i needed it so bad.

i met the pediatrician/ neonatologist woman working on our case too... this must have been the hardest part of the day. we sat in a room and talked about what the journey is going to some what look like... she talked about delivery and how i will have about 4 people taking care of me and 5-6 looking after olive. she made sure to tell me all the sad/ scary details of what can possibly happen. she informed me that because of her condition as of right now that most likely she will have to have a breathing tube because the drugs they will have to give her. the meds make it so breathing on her own will be very hard. she talked to me about "breast feeding " PUMPING really... and i think right about that point in the conversation i had to get up and go to the restroom to puke my guts out! it was all so over whelming and nerving.. i really wished Chris was there to hold me hand.

we toured around the NICU and really i thought this was going to be a lot harder but truly these little babies are so so beautiful. there was a little baby girl very close to where we where standing and she was all hooked up and even had a breathing tube and i wasn't seeing any of it i just saw this beautiful little girl. it made me want to hold my little olive in my arms. we also got to walk around the CVICU and in there there where babies and younger kids even a girl who looked to be around my age. i am glad i got to see it...

well my trip to Stanford was hard but it was a lot of good information and it gave me a bit of a chance to see what and where i will be in 13 weeks... yes 13 weeks i cant believe in less than 96 days she will be here. 

 !stay strong my little olive!

OCTOBER 3RD

we went on the heart walk and it was fun. it was 3 miles long and although i was no where near the first to finish i did complete the 3 miles :) here are a few photos!

me and my 26 week belly :) ... thank you family and friends who did make it out to walk with us! and for everyone who didn't and donated thank you so so much... donations are still being collected so if you want to donate please let me know! every dollar counts!

anxious

i want the weekend to be over already. i want to go to Stanford and get these appointments done with.
today i feel like i don't want to be pregnant anymore...not only do i feel like a cow and nothing is comfortable to wear but i could really use a night of some hardcore drinking.
this week has been just bad.

I was told not to dwell on what is going to be different but to remember that there are going to be plenty of things that will be "normal" when Olivia gets here. but truthfully i don't want to get my hope up about it because there is a mortality rate for a reason... there are mothers that don't get to see there babies because they didn't survive through the battle.... i try to think about how happy the day will be when she gets here but it makes me freak out .

not having Chris here is really taking a toll on me. i am so unbelievably lonely and i HATE living with my parents AGAIN. i miss having my own space my own kitchen some where that is home. i hate having to ask (beg) my parents to go to lunch with me... and on top of it all friends... you know when i got pregnant i knew there would be some fall out but seriously... a lot of my friends don't even text me anymore.. and i swear i don't talk to them about being depressed and what not i am still me i just cant drink. but its like i have a disease and HLHS is something there future children can catch. i get that i am far away and that people have lives but seriously you cant even text me?

i am going stir crazy locked up here. and there is nothing i can do about it ... plus i have no money so i cant even take the train or something somewhere...
I'm done with this year.

i knew that this was going to be hard... but this isn't something i thought nor do i want to do alone.

Testing

if there is a god ... then why?

we are not getting any breaks from all this bad shit going on in our lives. we tried to get chris home and it just inst happening.
i am tired and stressed out beyond return. i dont want to deal with this anymore!
why is this happening to us....  what did we do that was so horrible in our life to have to go through all of this? this isnt even the worst.
if you are listening, reading god.... why? why cant you just give us a fucking break ?

showing off my little girlie pie!

when i went to stanford they gave a me a ton of pics... so i will show you :)

so this is all going on inside here:

we got a few pictures of her with her mouth open

her little face... such a sweet little face

budda belly >-<

no more pictures please! she was getting so mad that we where poking at her all day from 10am to 2pm jeeze!

wave bye bye little one! <3 i love these ones of her hands i have one of her feet but it is very dark and you cant really see it to well....

well as for news i guess... umm tomorrow if chris's flight doesnt get canceled or he doesnt get on the flight he will be here by tomorrow evening! yay. that will be nice i told him his job is to keep me happy to be my yellow crayon i know he is so in turn i can be an extra happy lady for sweet little olive!

the 28th is our appointment with dr dizzen (sp?) my high risk obgyn and i also get to do a few more appointments too... thankfully i got the hubby here to share the driving and what not with me :D

stanford :D

OK so this is a little behind but Stanford went great. the hospital is located near shopping centers and a nice park area. i believe that getting a second opinion was a good choice.

Olivia's passage from the left atrium to the right is in fact open and they think she may have another defect in that area that is helping her. like there are more than one hole letting blood flow through the left to the right.
they also said that if the valve was as bad as the doctor said it was her chance of survival in the womb was not really there.they rate it on a scale and Olivia was no where near meeting the standards for the cath procedure. i guess it is like a +4 and she isn't ... so that's good. the she may not even need to get it i was so happy to hear this!

    My appointment started at 10AM and i was in with the faternal cardiologist until 1230 lol they said i was wonderful because i went in there knowing a lot and had my questions for them. Plus i think of my self as a pretty realistic person and when it came down to talking about the shitty parts of it all i didn't lose my shit and i was still able to talk to them like an adult would.

   3 different people came in to take pictures of the great wiggly one we call Olivia :D she is the most wiggly baby ever hahaha. plus i think she is a lot like me... she doesn't like being fucked with and she was not happy about the wand being poked at her. but to say the least i am much more confident about Stanford and their staff then i am or ever felt with ucdavis.

After that appointment i was sent upstairs to another appointment for an ultrasound and at this one they took pictures of all of her! she is one pound now !!! and we got great pictures of her . we have ones of her mouth open too! she was beyond pissed though could have been that i didn't eat at all for that whole time i was starving! she was kicking and everything! but they gave me a long strip of pictures for my keepsakes ... it was really nice to see my sweet angel.

so i have another appointment with Stanford on the 28th for the high risk OBGYN and the surgical team. i am rather excited about that but... i am not looking forward to them playing in my vagina. oh well its for the best. but the cool thing about Stanford i will have a social worker and a lady who schedules all my appointments together a coordinator :) how sweet is that !!!! they where all very awesome to say the least.


and one more bit of good news... Chris should be on his way home very very soon... the assignment thing is not humanitarian it is the exceptional family member program and it takes 4-6 weeks to process but his first shirt is pushing really hard to get him 30 days of leave to be here with me and get him here for a few appointments at least. so we are looking forward to that !

well OK that is what good news Friday brought to me  
:D

good news less depressing

sorry for the stream of depressing post... still trying to get my head around this and with out the embrace of my husband it makes it harder to slip into these poopy moods i guess...

so today woke up to take my dad to the doctors and before that i got to talk to Chris for a short moment and then!!!!! STANFORD called me... my mind must have shot some powerful rays to them letting them know i was freaking out and i needed to get seen for my sanity. i have two appointments this Friday a echo at 10 and a ultra sound at 1 ... yay i get to see our girlie pie <3 i cant wait.

ALSO Chris let me know that not only did my package get finished but the first they will start paying him for me... which is awesome seeing how the driving and the eating is really hurting or pockets and accounts!so this also means that tomorrow he will march his butt into the office and get his paper work started to come home to be with OLIVE, EVELYNN, and MEEEEEEEEEEEEEEEEEEEEE!!! thank god ... seriously then maybe i can get some sleep.

speaking of sleep i keep having these daydreams/dreams of sally from nightmare before Christmas and also the corpse bride... i imagine this is what Olivia will look like... and if you do know me personally you know i have a wild imagination and i don't think this is really helping any.

well i am excited about going to the bay and going to Stanford it will be nice plus i will be getting out of the house! and tomoroooooowwww i get to hear baby olives heart i have a obgyn appointment.

hopefully this week will continue to be a good one and i can stay positive and upbeat.
time to go eat the belly calls.

a post about feelings/ and a note to my girl

"When you come to the edge of all the light you know and are about to step into the darkness of the unknown, faith is knowing that one of two things will happen. There will be solid ground to stand on or you will be taught to fly."


a few things... i had an OK few days... well my mom and i did get into it and it was pretty bad... i stayed up all night crying and sad. we where screaming at each other and it was horrible. poor baby girl must have been terrified... i felt so guilty i just held my tummy and cried... "please forgive me olive...mommy isn't mad at you ... mommy loves you with all of her heart".... well i am finding things that hit a spot and things that make me either say "YES " that's what i want to say or "that's how i feel" i just thought I'd share...

what not to say to grieving person(s)...

“I know what you are feeling”

-No, you don't. And you really don’t want to. No matter what you have been though, no one knows what another person's pain is like. It is true. Even in the same situation, different people experience pain differently.

 “It could be worse.”

-Yeah, it probably could. But I don’t want to think about that either.

“You have to hold it together. Be strong”

-I’m sorry my grief upsets you. I’ll try to hold it together for your benefit, um-kay?

“Call me/pm me/text me if you need anything.”

-Odds are, we won't. Odds are we are so engrossed in what we are dealing with that having to actively seek help means we won't get it. If you want to help, do something productive and proactive. This part doesn't really work here very well, unless you pm the person regularly and ask how they are doing.. AND mean it. If this is an IRL situation for you, You should call and say 'I'd like to do some chores for you, I'd like to come cook a meal/bring leftovers, straighten up....Ect. It doesn't often help to ask what they need done because it is hard to ask people to do stuff you normally do and they don't want to put you out. So YOU should make a proactive effort to decide what to do.



“How are you?” (and not mean it.)
-You can tell the difference between people who ask because they want to know and the ones who ask because they feel as though they have to or who are only interested in short, positive answers. They never are very concerned with the actual answer to the question.

“It will be okay”

-Maybe. Someday. But I can't conceive of it ever being okay right now or for the foreseeable future. I'm not going to wake up tomorrow all better. We will heal, but it'll never be 'okay'

Although i have not lost my little girl i have lost a lot of what i thought was going to be... this maybe hard for some one to understand but ... i was one of the woman that was looking forward to a cranky baby and the feedings ... the "normal" baby things... part of that storybook life i dreamed of was shattered the day they told me about Olivia's heart... i get this maybe sad/depressing/ irritating but i do have all of these thoughts going through my mind. a friend of mine said to me ":she is a blessing no matter what"  she is a blessing but i don't think some one who hasn't had to go through something like this can really wrap their head around the pain that grows inside of you as your baby gets closer to birth you know you need faith and you know you must be strong but truly the stress and anxiety of it all eats away at you.




When I became a heart mother...

One day my world
came crashing down,
I'll never be the same.
They told me that
my child was sick...
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong.
It seemed my heart
was breaking...
As, I'd loved her for so long.
I will not give up on this child...
despite your best "advice".
I will give my child a chance...
No matter what the price.
And I will learn all that I need...
to help my child to thrive.
I'll even use that feeding tube...
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this...
I will not curse our fate.
The feeding pump beeps,
at 3:00 a.m.
It serves as my reminder...
How many parents would
welcome that sound?
Tomorrow Lord,
I will be kinder.
Another angel earns
their wings...
and I run to my sleeping
child's bed...
I watch her then, for
quite awhile...
Bend down and kiss her head
Then I cry for the parents
whose lives have been broken,
And I look to God
wondering why?
Oh Lord, I just can't
know your ways...
No matter how I try.
And yet, I trust You to
hold her life,
And guide us through
each day
My mind says savor each
moment she's here...
But my heart whispers,
"Please let her stay".
From... pacing the
surgical waiting room...
to sitting by her hospital bed...
From... wishing for a
good night's sleep...
to learning every med...
From wondering will
she be alright?
to watching her reach
out her hands.
With every smile, my
heart just melts..
despite life's harsh demands
For all who see
that faded line...
I look to them and smile...
You see, my child is
loved so much...
I would face any trial.
That same scar I trace
with my finger...
It's the door to her
beautiful heart
I never guessed how
much I'd love her...
Just as YOU loved her
right from the start
A heart mom is
always a heart mom...
Now wise beyond her years
And for those who have
angels in heaven...
Our hearts share in
all of your tears.
Everyday I will strive
to remember...
You chose me for her
and no other
And I will embrace
that beautiful day...
When I became a "heart mother".

~Stephanie Husted



**** My baby Olivia... if/when you ever read this please know that we love you and we want you to live your life to the fullest... we want to take you to your first sleepover...help you ride a bike... hold you when that first boyfriend breaks your heart...we want to help you get ready for your prom...get you your first car...and watch you get married... i can see it now you look like an angel in your gown...although your mommy and daddy are very scared about the road to come we never ever will stop loving you you make us so happy... i knew you would give us "hell" and baby girl you are but we will always be by your side and be there for you when you need us! have faith in yourself and in god and everything will be better in the end i love you my little olive and so does so so many people don't ever forget that!****

feeling it....

I'm noticing that i have days where i am a fucking mess ... seriously all i can think is what the fuck!? why is this happening. when i went to the pediatric cardiologist  doctor the other day it really threw me for a loop i should have known that it would be the worst case scenario ... her heart is in really bad shape. and its looking like right now she will spend about the first 6 months of her life for sure in a hospital. :( and i will not be able to hold her after birth she will be rushed away to get a surgery ... breaks my heart. if you take a look at the picture the yellow marks are where the passage needs to be open and hers are not. so before she is able to have the first step of the surgery she will have to have a catheter  procedure done to open up these passages... meaning mommy and daddy doesn't get to bask in the glory of the beautiful baby they made, they get to sit in a hospital room with out their sweet little girl because she will be in another room getting taken care of.

 Ive been reading that this is called mourning the loss of a "perfect baby" ... but truthfully i feel like i am mourning much more than that ... i joked about it before having a downs child and honestly i would take that over this any day... why does this have to be so hard? i am so angry today this isn't fare. i feel jealous of these moms who get to take their little ones home. it makes me angry when i hear about these little things they get to do or "have to do"  and just wish that was my biggest complaint. heaven forbid your baby only let you sleep 4 hours last night...or the nursery needed to be a lighter blue but your husband got the wrong color blue. i have to think of hospitals stays ... what will i need to accommodate the medical needs of my baby...where will i stay during the countless nights she will be hooked up to machines to keep her alive. i really wish more mothers would realize how special it is to be able to have a healthy happy baby..

i am trying to stay positive but if you've never been in my shoes then i don't want to hear it right now. you don't know what i am feeling .... this isn't easy and i don't feel strong i feel helpless and hurt.

Holland

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

 

a young man who's family is going through the same thing we are shared this with me and i thought id share it with you too... this is how i feel and i am not alone ... our dreams of what could have been have been shattered  and it is time for us to make new ones.

Best of luck to you Little Will your journey starts soon and when Olivia is here we will have to have you two meet ... :D

thank you Kohn family for sharing your journey with us .

 

update a little later on the doctors appointment today... i am starving and dont have the energy right now.

 

The day we learned that "Its a GIRL"...and a few days after...When it changed.

AUGUST 9 2010             

 We woke up early this day.. I remember being super excited about going to our appointment this would be the first appointment and ultra sound that Chris was able to be at so both of us could not wait to see our little angel moving around. By this point all bets where in and Chris was dead set on the FACT we where having a boy, but I had a good feeling we where having a baby girl. We got in pretty fast and the tech was very nice and chatty with us. She got a lot of really good pictures of our baby it was so exciting. When she asked would we like to know the sex i think both of us screamed yes :) and she rolled the wand over my belly and as clear as day you could see two little legs... by this time i had a huge smile on my face and i knew that was my little olive in there! she tells us i have to tell you we think it is a girl but i am almost 100% sure it is! "HA I TOLD YOU!!!!  I tell Chris and both of us where smiling so big at this point.

             I guess about this time is when we should have realized that the tech was having some issues (but i think the excitement of her findings put us on cloud nine) she had me roll into different positions to try to get a picture of Olivia's heart but couldn't get ones she liked ... she said "she is already very stubborn!" i think they say these thing so you don't freak out by then we had already been in the room for 45 minutes... this isn't normal. she tells us that she needs to get another set of eyes to try to take a few more pictures. this woman takes a few more and you can tell in their faces that something wasn't really right... but like i said we didn't seem to even notice at the time i mean come on we just got great news we are having a little girl.

AUG 13th 2010

After dropping Chris off at the airport to return home to England I drove back to my parents house to get some sleep and try not to think about missing my husband...besides i only had a few more weeks left in California before i was planning on returning to our house in England. Or at least that's what i thought. i must have been napping for about 3-4 hours when my dad came into my room to give me a phone call. it was my obgyn Dr. Bippart. He goes on to tell me "i don't want to alarm you but the ultra sound results came in and i want to send you to a specialist. they had issues getting clear pictures of your baby's heart and we need to get some good one. don't worry though the machines here are not as good as the ones where i am sending you. they will be calling you to make a appointment." about ten minutes later the people down at Sacramento maternal fetal medicine called me and set me up for the 19th ... why do they do that to you call with unsure/bad news and make you wait so long... ??? by this point i am pretty sure i knew something was wrong. i tried to tell myself that nothing was wrong and that our little girl was perfect that she was being stubborn like me and made it hard to see her heart.

AUG 19 2010

My mom went with me to this appointment and thankfully she did. On this morning i woke up feeling pretty normal but something was irritating me in the back of my head. i guess i sort of knew it was coming. while the tech guided the wand around i took in every little image of my little girl because something in my heart told me that this is the calm before the storm and boy was i right. when the tech had pulled up the images of Olivia's heart i felt my stomach sink. it really didn't look right... but what do i know i am not a doctor so i tried my hardest to shrug it off. when she was done getting the images she needed she said that the specialist would be right in to talk to me. I remember reading about him online the night before so i knew that this could not be good. he took a few looks at her heart and moved her around a bit and then this is when my life changed forever. He helped me sit up and told me "I'm sorry but there is an issue with your baby's heart... it is called HYPOPLASTIC LEFT HEART SYNDROME" ... i had no idea what this meant but i could feel the tears welling up in my eyes and my body began to shake. he explained to me what this was and i knew that this was serious and that my baby girl in fact was not okay. that day i had an amino done where they take a large needle and poke you in the belly and get fluid from the sac where your baby is... it was so scary and you cant move or you can possibly kill your baby... and i don't care what anyone says but IT HURTS!!!!!!

after all of that we went and talked to the genetic counselor she wrote a lot down and explained more about what was going on.

Calling Chris: telling Chris had to be one of the hardest things i  had to do that day. the day before we had found out that we would not be able to have his daughter Evelynn come to stay with us and that she would not be able to live with us until she was 7 if we where overseas. with him being in the air force and him having no choice in the matter really hurt us both and now this..... plus that day the 19th he missed staff by one point. talk about a rough day... we both cried while i explained to him what was going on and what would happen. This day will be always remembered as the day that changed our lives forever.

AS OF TODAY:

i think both of us are still struggling to stay positive and hopeful but when faced with something like this it is easy to breakdown and cry. We ask ourselves why did this happen .... why Her? but regardless we love our baby girl and we are going to fight for her as long as she needs us to.

our first family picture