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!