Mia Marrone Heart Foundation Pendant

Tuesday, December 27, 2011

Contractions, Contractions,Contractions!

Well where to start? Hmmmmm.  Well I suppose last Wednesday because we were in Labor and Delivery  after a non-stress test because the ladies thought she was going into labor. They decided to let us come home because the contractions were relatively mild and she would more than likely just go into labor some time soon. WRONG!  We went through the holiday cramping and contracting along which was extremely uncomfortable for Lisa and as you can assume not fun. Although Christmas was kinda lame it did have it's moments where we were happy even though we could not see our family or friends. Christmas eve we had a very nice brunch in the morning and then for dinner another very nice family brought dinner which was also very good. Then Christmas morning on our way to yet another brunch we were extremely surprised to see that they had hung a stocking on our door with a little stuffed polar bear sitting on the floor. It wasn't much but it really made my day. The stocking had some See's chocolate balls (which Lisa loved) and a little globe she can put Cemaia's picture in.  We also picked up the presents we had picked out from the Santa's workshop and they are still wrapped and waiting for Cemaia.  After brunch (which was good) we took a nap and this whole time Lisa is still contracting like crazy! Oh yeah we also found at the door later that day a pair of slippers with a card to me. This was awesome because I really wanted a pair seeing as I'm too lazy to want to put my Vans on every time I want to leave the room.  Anyway Monday nothing really happen (we did get out of the room because we are going insane being in here all the time!) and Lisa was contracting like usual about 2 to 8 minutes apart but never really more than 10 minutes apart.  We did go to Labor and Delivery again because the contractions were coming just a little more than they have for the past 3 days and we wanted to see if she was farther along than the first time, NOPE.  So we decided to go out to eat. It was good! We woke up this morning early to go to another non-stress test at 10.  When we got there we told them that we were aware that Lisa had been contracting a lot and the day before she had just been to Labor and Delivery but they said she wasn't having strong enough contractions to say that she was in "active" labor, apparently the lady (although very nice) wasn't listening because she asked about 10 minutes into the test if Lisa was feeling the contractions because (once again) they were coming regularly and fast.  Of course Lisa was feeling them and we told them what they had said the day before and they let us come home.  On the way home we decided to go to our house in Ceres to see the dogs and her mom because we are home sick and just need a doggy fix.  We had the car packed with most of the extras we really don't need right now and were going to leave when Lisa decided it would be best to ask the OB before we leave just to get an opinion on how safe the journey would be.  Of course the answer was NO. Well at first it wasn't no, but after looking at her chart and talking to the doctor it was no. Although disappointed we know that staying here is probably for the best and that IS of course why we have been here so long in the first place. So here we sit while our daughter teases us with contractions waiting and home sick.  Oh well at least the dinner that is being provided tonight smells awesome and we get some free family pictures!  Gotta love RMH!

Thursday, December 22, 2011

Still No Baby

Well today was a little uneventful. I suppose that is a good thing. Lisa is still contracting it's just not as strong as it was yesterday so there was no need to go to the hospital. It's still a waiting game for us. Instead this morning we called a photographer in town (helpful hint: always ask how much the sitting fee is!) to take much wanted pregnancy pictures for us. Lisa has wanted to take these pictures for weeks and it was now or never seeing as yesterday it seemed more like never.  Never under estimate the power of a pregnant woman when she wants something! Somehow I think she made a deal with Cemaia to hold off a little while so we could get these pictures done. So because she held up her end of the deal we went and got some baked chicken and potato wedges to say thank you.  I also found out today that I am O positive so we have a better glimpse of who will be able to give blood to Cemaia when the time is right.  Downstairs while we ate dinner they had a group of people singing Christmas carols which was nice.  Other than that today was uneventful (baby wise) for me and uncomfortable for Lisa.

Wednesday, December 21, 2011

A taste of things to come!

Well today was interesting!  Today we were "supposed" to go in for a non-stress test and a growth scan to see how much the baby weighs. Easy right? Nope! This morning after a light breakfast of cheerios and apple sauce we got to the hospital on time and started the non-stress test.  Lisa had already been contracting all night long which prevented any kind of sleep and was needless to say very uncomfortable.  Toward the end of the test the ladies (that made it clear they are 49er fans) noticed that Lisa was contracting a lot and determined that the ultra sound we had planned on going to was going to have to wait  because Lisa was ready to go. After they found me (they thought I was sitting in the waiting room, I was sitting but not in there) we went to Labor and Delivery to check her cervix out and see how far along she was so we could call everyone and they could be here for our daughters coming out party.  After waiting for about an hour they finally checked her and said that her cervix was still closed but more than likely she would be giving birth within the week. Although we were a little bummed that we would not be meeting our little girl today it is probably for the best that she can stay inside for awhile longer (even if it is only for a few hours or days). This also gave Lisa a chance to get over a little of the fear she had about giving birth. So after going back for the previous ultra sound that we had missed (which was preformed by a very RUDE tech) we came back home and took a nap! Now after eating a very good dinner provided by the RMH (God bless these people!) and finishing decorating our tiny tree we sit and wait. Lisa is still contracting but not quite as bad as before, but still consistent. It's only a matter of time!

Baby Shower!

Sorry this one is a little late, a lot of things have been going on and it kind of slipped my mind.....oops.
Anyhow here is the recap!
It was Sunday Dec. 11 and we got there about twelve thirty, we weren't late which was incredible and that was even after Lisa decided what she was going to wear which is a little limited nowadays. So we get to the party and do our rounds of hello and hugs to Lisa's Mom, Susan, Dave, Michael, and Kelsey.  We were handed two shirts (mine green and hers pink) for people to write well wishes and so fourth on. They also gave us two sashes to wear.  Lisa's was very nice and said "mommy to be", mine was  nice and had the word mommy scratched out and daddy written over it. I'm not sure what kind of marker they used but I started to get light headed from the fumes which prevented me from wearing it. People start to arrive and the party is on! Great food, and a lot of people showed up. It was so great to see so many people who cared about us. There was also a lot of fun games to play! The ongoing game through the night was the don't say "baby" game. Which I started to do very well at until my friends son tried to get me. Although he didn't my brother in law Dave tricked me and I lost. That little kid was clever and actually ended up with quite a few necklaces but in the end lost, oh well!  They also did the "how big is Lisa's belly game". I must say that some people are either really mean or just have really bad perception of how big she actually is, which drove Lisa and her oldest friend to laughter when one of the guests just kept taking more and more toilet paper! There was even talk of thinking she may have been taking it for her height rather than width. We did a "what is the baby name for that animal" game which I was horrible at, although I do think "egg" was the correct answer for many of the animals! One of the guy games was the "drink from the bottle" game which I am proud to say I did horrible at! My brother in law won that one ha ha! Also we played baby bingo which was fun. And last but not least we both filled out cards to tell what traits from both of us we want the baby to have, I chose everything to be like Lisa except her sense of humor, why would I want my little GIRL to look like me?? I did make crazy funny faces the whole time while people studied me which was fun!  Gift time was great and although I couldn't possibly name off all the presents we did get trust me when I say it was many wonderful gifts, a few duplicates, a pak and play from her brother Thomas, the babies room furniture from Lisa's mom and dad, a car seat from my mom and dad, and one very nice glider provided by her sister and her family, which we loved!  All in all it was a great time and we felt very blessed to have so many people show us love and to have such a wonderful sister and mom to throw us such a great party for our little girl!

Saturday, December 17, 2011

Ronald McDonald House

Well we are here at the Ronald McDonald House!  I miss my house sooo much! The day we got here we were supposed to leave at seven a.m. and go to an OB appointment at 10:30.  That didn't happen.  What did happen was us waking up about ten, calling the Dr.s office to reschedule our appointment, walking the dogs, locking up and saying goodbye.  The only thing holding Lisa back from balling her eyes out was telling ourselves that we would come back in a few days to check on things seeing as we probably won't have the baby anytime soon.  Now that we are here it seems that plans may have changed. Lisa is getting a lot more pains lower than she ever has before and thinks that the baby won't make it to her due date.  We have an appointment Mon, Tues, and Wed to find out what's going on in there, then we'll talk about maybe making a trip home to see her mom and the dogs, but i don't think that's gonna happen.
When we did arrive at the McDonald House we were very happy to see that everything we had heard about it was true, even before we registered they offered us dinner (spaghetti and Meatballs). Everything is very nice here and the other families are all extremely nice! I just wish the outside world was this nice, it would make it a much better place to live! Our room isn't big but we wouldn't need a big room anyway so it suits us just fine, but the bed sucks.  Well to be honest with out the two mattress pads and the padded mattress cover it sucks, but with these add ons  it is much much better. I have heard from other families that they got sleep number beds, and yes I am jealous! But bed aside we are very happy and thankful for everything the McDonald House is providing us! And if you don't believe in signs we had a huge one sitting in the main lobby for us.  In the main lobby they have a 12ft tall Christmas tree filled with nothing but dog ornaments from top to bottom! For those of you who know us that is one hell of a sign that we are supposed to be here!  We also got a 3ft tree for our room that is totally pink for Cemaia. It's not much but it brings Christmas into our room and makes us happy to look at it! Well that's about it for now.  Now that we are here and have nothing to do I'm sure we'll be updating the blog a lot more than we have been.

Wednesday, December 7, 2011

Stanford Appointments 11-30

   We have many updates to catch up on. As stated in our previous post, we had many appointments scheduled on Nov 30th at Stanford. We decided to head to Stanford the night before our appointments due to the early morning fog and the long day ahead of us. We stayed at a little motel. It was very clean and had  Directv. My mom stayed with our doggies. We had never left three of them overnight and it has been over 3 1/2 since we've left the other two overnight. We will be leaving them with my parents for nearly 2 months for Cemaia's birth and surgery so we thought this would be a good trial run for them. Our biggest baby Koda had the hardest time. Apparently he kept everyone awake until 3 am. But they did well overall.
   Our first appointment was an ultrasound at 9am. We found out that Cemaia is now weighing 6 lbs 1 oz and she is 6 days ahead of schedule. We feel very happy about this. They still feel that her organs are developed nicely and her lungs are looking good. They had a hard time seeing her face because her head is so low. Next we went on to our fetal echocardiogram. Our tech was very nice and she made sure I was very comfy with a nice wedge pillow. We met our cardiologist who was very nice and a lot more positive than others we have met with. It was nice to talk with her about Cemaia's future rather than listening to someone tell us how most children will not make it to see their 5th birthday. She also told us that their doesn't seem to be anything different about her heart. She may have a small VSD. She doesn't believe that the size of her ASD will need immediate attention when she is born. We were very happy about that.
   Time for a lunch break. Wow! We didn't realize how expensive cafeteria food is. While we were finishing up I received a call from our social worker. We met with her for tours of the NICU and the CVICU. After the tours I began to feel very dizzy and sweaty so we sat down for a while. After a short break we met with the Neonatologist. She answered many questions and provided us with info about breast feeding and what we should expect to see before and after surgery. Next we had an appointment across the street with the OB doctor to come up with a delivery plan. I expressed that I would like to give Cemaia the power to decide when she wants to come. They agreed and said I would only be induced if I went 41 weeks as long as we could make arrangements to stay close by when I'm 37 weeks. We are very happy about this. Overall our day was very long but we received a lot of positive information and felt very encouraged. We feel good about our decision to go to Stanford and are beginning to look forward to getting Cemaia the help she needs.

Tuesday, November 22, 2011

We have an appointment in Stanford on Nov 30th. We will be there all day to get an echocardiogram and an ultrasound. We will also be meeting with the social worker, the neonatologist, and an OB doctor to make a delivery plan. We also have an appointment to meet with doctor Hanley on Dec 2nd. I can't believe it!! The  referral process took over a month. The first referral Kaiser only approved me to give birth so they had to resubmit a second referral to approve any testing and follow up care that I needed in Stanford. The second referral took a while as well and I was told that Stanford (as a facility) was approved but the doctors were not. I made many phone calls and finally got it straightened out. I can't wait to have my ultrasound...I'm curious to see how much Cemaia weighs. She is getting stronger everyday! Some of those kicks hurt :) but they make me smile.
We are still working on getting the house ready for Cemaia. We are moving furniture, stocking up on supplies (soap and sanitizer) and we are getting rid of clutter. I washed her clothes and blankets and packed a suit case for her hospital stay. I've been sleeping with her bear so it will have my scent on it. At first our dogs thought it was a toy for them,  but they've been really good about leaving it alone. It's 5 am and I've already been up for a couple hours so I need to get back to sleep before my doggies decide it's time to get up. Koda, Holly, and Wes are all snoring :)

Monday, November 14, 2011

Sore Throats, Refferals, and a Baby Shower

I'm back!  I know I haven't been writing too much the past few weeks, sorry : (
The past few weeks a lot has been going on in our lives. We received a gift from a part of our heart family from Kansas with some starter supplies for our baby girl and a blanket. We were very touched by this and would love to pay her back somehow someday, but for now all we can afford is to say thank you and it meant a lot to us that you would take time from your life to bring some happiness to ours!
Also Lisa has been fighting a cold for the last week or so. She has been taking vitamin C pills and drinking lots of OJ full of pulp to fight off the ickyness of her illness. Just one more thing that she can pile on top of her "this sucks" list I guess. Not to mention they stopped making the protein shake she grew to love two weeks after she found it. Seems like every time she finds something she likes they stop making it. I know that sounds like it wouldn't really happen but after I met her I started keeping track and it really does! It's kind of spooky! That's why I don't let her try any of the things I really like!
Ok on with the baby, I'm trying to make this as long as possible because I haven't written anything in awhile, feels like I'm back in school trying to impress the teacher! We also have been trying to get a referral to Stanford through Kaiser, but as anything health related seems to go they (of course) are dragging their feet. The first time we asked they gave us a referral but only to deliver at the hospital. That was great but you would think they would have also given a referral to see the OB before the delivery as well, but they didn't. Apparently they have such high regard for them they thought that they wouldn't need to see Lisa or would want to know exactly what's going on in there before the birth. WOW. Needless to say we are waiting for yet another referral which could take up to two weeks to get before they can make us an appointment to be seen. SHEESH!!  Also to make things better (one more for the list) her actual OB told her that she only needs to be seen once a month, this didn't make any sense because all of Lisa's pregnant friends with HH kids are seen every two weeks, and you would think that with a high risk pregnancy they would want to see her a minimum of every two weeks! This is also something that we are trying to correct
Last but certainly not least my mom threw a baby shower for us yesterday at my cousins house! The shower was very nice and a lot of my family showed up which was also very nice. I think some of the games were rigged so certain people would get certain gifts but I didn't get to play so it didn't really matter I guess.  We received many thoughtful gifts, and we were very grateful that everyone took time to celebrate our daughter with us! Although I tried to escape many many times I ended up staying until the end.
Well I suppose that's about it, although I know it isn't, hopefully I can give a better update a lot sooner next time!

Wednesday, November 2, 2011

So Many Emotions

We are happy to announce that Stanford received our referral from Kaiser today. This means we will be able to have another consult with Dr Hanley and we will be able to take a tour of the children's hospital. The coordinator will be giving us a call when she has all of our appointments set up. I feel so relieved, but also very scared. I am very excited about meeting Cemaia, but with each day that passes I find myself becoming more nervous. I am afraid for my little girl...not knowing how she will recover, if she will need a feeding tube, how long she will be in the hospital, will she have other complications, will she make it through all of this? I don't want to see her hurting, I just want to hold her and comfort her. For now we just need to be strong and happy for our baby girl because she is okay right now. I will continue to enjoy every little kick and Wes will continue to read to her. We love Cemaia very much!

Tuesday, November 1, 2011

Nine Weeks To Go!

We've been busy getting the house ready for our baby girl. Wes painted Cemaia's room...it looks so pretty! Tomorrow we will sand down a hope chest so we can paint that as well and we are going to put up some trim around her window. Very excited!! When it is completed we will be posting some photos. We have a couple more projects we are working on for her walls. Wes is also going around the house making sure that every crack in the baseboards, trim, and walls is caulked up. Wes will be painting the main bathroom and turning it into a sanitize station for Cemaia's visitors. We are also going to rearrange some furniture and turn our family room into a sanitary room for Cemaia...free of dog hair. Sorry doggies, I never thought I would block them off from any room in the house, but they will not be allowed in Cemaia's bedroom or her familiy room during her inter stage period. Our doggies will still sleep in our room on their own mattress, while Cemaia will be sleeping in her bassinet next to our bed. We need to buy a good air purifier for our room. I'm very happy we are getting these important things done because I'm getting very nervous about the time flying by.
We are very grateful to our new heart family friends. They are offering so much of their helpful advice about hospital living. We will be ordering many things on Amazon for Cemaia's hospital stay. These families have also told us more about their experiences while in the hospital to better prepare us for what to expect and how to handle issues that may come up. We are very very grateful to these families.
A heart mom has recently called me to offer any advice and to lend an ear. She is amazing!! Such a strong woman! We still cannot believe how many wonderful families we have met since we received Cemaia's diagnosis just 2 1/2 months ago. Initially, we felt so lost and alone. These families have given us so much hope. It's truly amazing to us just how much they have helped us with this life changing diagnosis.

Friday, October 28, 2011

Time is Going too Fast!

Well this week has flown by! I'm sorry I have not been more consistent about writing my blog daily, we've been busy!
So far we have (for now) decided on going to Stanford so Dr. Hanley can work his magic and help us bring our daughter home! This was the hardest decision we have ever had to make, but in the end it came down to only two surgeons that we would have enough faith in to take care of our baby! Choosing to go with the Norwood was not an easy choice but we feel it is the right one due to not haveing any forward flow through her aortic arch. We will be close to our support system, her surgical team, we won't have to worry about traveling with our little girl inter stage which was really freaking us out, and Dr. Hanley is in the top 1% of surgeons in the nation!
Lisa is still dealing with her kidney stones which is a real pain (no pun intended) but she passed the first one and is working on passing a second, we'll see! Of course the Dr. we went to see couldn't do anything for her and the Meds he gave us are still on the counter unopened. At least I know if I ever get hurt I'll have some good pain meds on hand while Lisa makes fun of me for being a big baby!
Well all we have to do now is prepare for our trip which will probably be mid December and get the house in order for when our precious little girl comes home! One and a half months left and I know it will go faster than any other time in my life that I can remember! Wish us luck and say a prayer!

Sunday, October 23, 2011

What A Week!!

It's been a few days since I last wrote something, sorry, it's been a busy week! To recap we had two visits to two different hospitals (San Fransico and Stanford) and two hospital visits that were not by choice, We thank God that the visits to the surgeons went very well and nothing much changed with our baby girls condition, we give even more thanks that the two unplanned visits turned out SO much better than we had expected! In fact Lisa thinks she may have finally passed a kidney stone today and is feeling a lot better! Only 8 or 9 left! Yuck!!
We feel very blessed that we have had so much support from family and friends (old and new) Without all of you this journey would be infinitely harder than it already is!
We are still trying to figure out which hospital to go to for her, and although we have narrowed it down to two, every time we seem to lean towards one the other offers something that makes us lean the other way. It's nice to know we have two great hospitals that we know will take care of our child so we can bring her home, but making the decision is really much harder than we thought it would be. We are running out of time but I know in the end it will be right and what's best for our family!

Friday, October 21, 2011

Stanford or Ohio

Thursday morning I had a phone consult with Dr Galantowicz from Ohio. It went very well and I really liked him. He said that our baby would be a candidate for the hybrid. This made me happy because it gives us more choices, but now we have to make the decision. We are going to talk a lot about what we think is best for our little girl. There are so many pros and cons to consider for each. If we choose Stanford we will have a top surgeon perform her surgeries and she will have her surgical team close by. However, she will have to have an open heart surgery in her first week of life and we worry about the long term effects on her brain. If we choose Ohio we can have a simpler procedure and postpone the open heart surgery, which will give her brain time to develop before a major surgery. However, her second surgery will be more complicated, she will have to go into an airport during flu season and she will need closer monitoring during the inter stage period. Both hospitals have the home monitoring program, which we are very happy about! We will let everyone know as soon as we make our decision. And if anyone has any input...please feel free to offer your advice!
The rest of the day I was very tired and in a lot of pain. These darn stones will not pass. I took a nap, spent some time with Wes when he got home from work and then tried to go to bed, but I just couldn't get comfortable. I finally broke down and took half a dose of Tylenol to take some of the edge off. Wes has been very worried about me. He's so caring. I cannot wait for our little girl to experience his love.

Wednesday, October 19, 2011

Optimistic about Stanford!

While on our way to Stanford I began having my kidney stone pain again...not fun! Wes made sure I kept hydrated and we stopped often so I could pee. We were a little late arriving to Stanford, between the traffic and the frequent stops. At first, we weren't sure if we would be able to see Dr Hanley because he was due in the OR soon. Luckily, we were able to meet with him. We both really liked him! Wes said, "I'm not big on celebrities, but I felt star-struck when I saw him." He was much more positive than most doctors we have talked to which gave us more hope for our little girl. He said that he wouldn't recommend the Hybrid for Cemaia. We were a little disappointed, but we kind of had that idea. We found out that she would only need to be on the heart-lung bypass machine for the first surgery and that Stanford has an incredible Home Monitoring Program! We were very happy because we've been asking UCSF about this for a while now. We were also told by a previous surgeon that Cemaia's surgery would be more difficult than most HLHS babies to perform because her left ventricle and ascending aorta is super tiny. Dr Hanley didn't seem to think it would be a problem. He said he sees babies like her all the time so he doesn't foresee a big problem. Another thing we were happy about is that they have replaced the BT shunt with a modification to the Sano Modification. They place a valve in the conduit to prevent an obstruction. Dr Hanley didn't make us feel rushed even though he was due for surgery soon and he answered most of our questions. I will be getting a referral from my insurance so we can go back and speak with him and take a tour of the children's hospital. On the way home, I actually let Wes drive because I was in so much pain. We were hungry so we went to Raley's and I got some bread and spinach dip along with a giant fruit platter! Yummy!! Wes went to Burger King to get the Whopper. We stopped at the GNC in Manteca to pick up some more protein powder for my shakes. They only had vanilla flavor...I don't like it too much, but it helps my little girl grow big and strong. We arrived home and I went straight to bed to sleep away my pain. I stayed in bed for the rest of the day, except for the 30 times that I had to pee. I got up to write this and now I'm going back to bed! I have a phone consult at 7am with Dr Galantowicz so I need to be well rested so I can think clearly. Good night everyone!

Tuesday, October 18, 2011

Answered Prayers

So, I felt pretty sore today so I tried to get some rest. I found out yesterday that I am anemic so my hubby bought me some Iron pills and orange juice. It feels so good to be home today! Last night was the scariest night I have ever experienced. I couldn't believe that we were in the hospital, thinking we were going into labor and now I just cannot believe that we are back at home. I am so thankful. While in the ambulance I began praying that Wes would make it to the hospital safely. I could see how worried he was and I knew he would be driving a bit dangerously. Even the ambulance driver said, "Wow, this guy is driving like a maniac." He wasn't supposed to be following the ambulance. He was actually ahead of us at one point, then spotted us and followed us the rest of the way. When I first got to the hospital the doctor was talking about giving me a steroid shot so our baby's lungs could have an opportunity to further develop. She said that they would get us as stabilized as possible, keep me overnight and then transport me to UCSF. I was trying so hard not to cry and freak out. I knew I had to stay as calm as possible. The stress wouldn't help Cemaia...no matter what was happening. They performed tests and I just prayed for the best possible outcome, not even thinking that it could be my kidney stones. I believe that Cemaia was trying to tell me "mom relax, I'm okay." through her movements. She never stopped moving (throughout the ambulance ride and in the hospital).
I've had kidney stones since I was 17. I always know when I'm passing them, but this time I had no idea. After some invasive tests and an ultrasound, the doctor said the baby seemed okay and she didn't know where the blood was coming from exactly. Then she realized that I could be passing a stone. So I had to have a catheter put in...Ouch! It was confirmed. I was so relieved that my body just started shaking uncontrollably when she gave us the news. Wes was great and he began encouraging me to take deep breaths. We were so thankful and couldn't wait to get home. Our poor doggies were gated in for nearly 15 hours. They really had to pee when we got home...ran straight out the back door. I ate a bowl of cereal while Wes wrote on our blog and then we went to bed. Tomorrow we are meeting with Dr Hanley in Stanford for a consultation. Wish us the best! We will update everyone tomorrow!

Happy, Scared Stupid, Relieved!!!

Well it's two in the morning and we just got home a bit ago, I guess I'll start at the beginning of this incredibly CRAZY day and fill you in on why we are still up!
It all started this morning, just like any other morning we woke up, walked the dogs, fed the dogs, and then it was off to San Francisco for another sonogram to check our little girl.  Everything went smooth! We even got there early because there wasn't any traffic to deal with like there is in the morning, it was great! We got the sonogram done, they weren't too rough (for once) and the cardiologist said that nothing looked any different than it had the last two times and she wouldn't assume that there would be any change in the coming weeks. Great news! Although she did say that our little one might not be a candidate for the hybrid because her aortic arch was a little smaller than they like and there was no flow going through it, this news was not what we wanted to hear, but as has been proven before she could be wrong and we still have three more people to talk to and see what their opinions are.
So now we are on our way home, it's a little after 5:30 and we hit traffic going out of San Fran, "this is just great" I'm thinking, and we're hungry. Lisa starts feeling pain in her stomach and back, we're thinking it's from laying on her back for so long, then she starts having cramps. We get to Livermore and Lisa has to go potty. I'm not thinking that's a bad idea. We find a Target and make the stop. We went to GNC to find out that the protein drink she bought last month has been discontinued (gee wiz) and then we go into the Hallmark store to pick up some pregnancy cards I have been getting her every month and we found a cute pug ornament. Now I really have to go and we skip down to Target straight to the bathrooms.
So I'm sitting there taking care of business wondering why the guy next to me keeps flushing the toilet repeatedly.  My phone rings and it's Lisa. " why the heck is she calling me now?" "this isn't funny" I thought. Well she wasn't calling me as a joke, in fact it was very serious. She tells me that as she was going to the bathroom all that came out was blood. 
I ran out of that room in a shot, found Lisa and we went straight to the fist clerk we could find and asked where the nearest Kaiser hospital was. "Turn right out of the parking lot and straight down the street" and we are gone! Both freaking out (me more than her) we drive right past the hospital. After I go into a seven eleven and get bad directions, then find out how to get there off the phone (thank god for smart phones) we find the hospital! It's closed, this wasn't an emergency hospital,  it was just for routine visits. What are we going to do???  Now my wife is awesome under pressure while I on the other hand am not! She decides to call 911 and have the ambulance pick us up in the Target parking lot (GREAT IDEA!) So the ambulance gets there and we tell them what's going on so they put her in the ambulance, write down the directions to the nearest Kaiser (30 miles away) and we are off again, Lisa in the ambulance and me in the car, although I left first so I would be there when she got there. Never know how fast you can drive until your pregnant wife is in the back of an ambulance going to a hospital you have never seen in a town you've never been to!
We get to the hospital and the paramedics tell me I have to go to the other side of the hospital to park while they set her up, so I haul butt to the parking garage run back to the ER and talk to the slowest security guard they possibly could have hired. "I'll let you see her when the admit her, should take about 15 minutes." Ok I can deal with that, I sit down and wait, and wait, and wait. This is not making me happy! I get back, up look this guy dead in his eyes "WHERE IS MY WIFE?", the guard gets up (slowly) walks in the back and comes back to tell me she's in Labor and Delivery.  Holey crap!! If I wasn't freaking out already!! I run to the elevators (which happen to be in the other building) go to the second floor, and finally find Lisa.  She's coming out of the restroom already changed into the gowns that shows your butt off if you don't hold them closed. She has to run tests to see what's going on and she is hooked up to a monitor to make sure the babies heart rate is ok.  The OB on that night tells us that she may go into labor and they might have to give her a steroid shot to help the babies lungs develop.  If she is stable she will get transferred to UCSF. Not good! They do a few "invasive" tests and determine that the blood wasn't coming from the baby. After an ultrasound they find that there isn't anything wrong with the baby. THANK GOD! Lisa's whole body started to shake, she wasn't scared but we think the relief just took over. She took several deep breaths and calmed down. They do a final test and determine that with Lisa's history of Kidney stones and the fact that she wasn't drinking as much water as she had been, she had passed a stone, and because she was dehydrated it would have given her the symptoms of the beginnings of a miscarriage.  Although Kidney stones are serious we counted our blessings that it wasn't what we had originally thought it could have been, and the whole time my wife was calm and never really freaked out about anything.  She said she was being strong for our little one and man was she! I don't know how she did it but I was proud of her! My wife is awesome!
So that was our day. It's now three in the morning and I'm going to bed to dream about the day we can bring our little princess home! Good night! And thank you to everyone that sent us positive thoughts, prayed for our family, and showed us that we are loved! We love you too!

Sunday, October 16, 2011

Gonna be busy this week!

This week is going to be a busy one! Tomorrow we are off to San Francisco for yet another sonogram, hopefully there is still no pressure in the heart where the veins connect the heart to the lungs and we also hope the atrial septum hasn't got any smaller. If the cardiologist we have been seeing is right ( hopefully she is) nothing should change from now until she is born. Then on Wednesday we are off to Stanford to see Dr. Hanley for his perspective on everything, he is supposed to be in the top 1% of surgeons in the nation so he is defiantly one of the people we have in mind to handle this for our little girl. Finally we have a phone consult with Dr Galantowicz in Ohio. We really would like to have him do the sugary for her because he does the hybrid approach and this is something we really want for our little one because we feel the Norwood procedure which is the most common way to go for HLHS may be too rough for our fragile little girl to go through in the first week of life. So hopefully after meeting with these two doctors we will be a little closer to a decision about what would be in the best interest of our daughter! Man it's gonna be a busy week! Wish us luck, say a prayer,and keep your thoughts positive!

Saturday, October 15, 2011

New Page for the Dads

Nothing much is happening today,  Last night I finally made a Facebook group for the fathers of CHD children.
It has become apparent to me and my wife as we go along on our journey as we come in contact with more and more heart families the majority of people we are talking to are the mommies. Not that I don't appriciate all the tons of information from all of these wonderful people, I was just suprised to see that there are not really any dads out there sharing their experiences. I mean I have met a few, maybe two, one for sure and he is really a great help even though he isn't a steeler fan. He still seems really cool!, but otherwise nothing.  So taking the advice from my wife I made a page for the guys to come to so we can brag about our kids, ask questions, and just know that there is a place where the dads can go and talk to other dads that are in the same boat.  Lets see how it works out, right now there are more mommies that are a part of this group than daddies, but it's still early and new and I have high hopes that this page will do well!

Friday, October 14, 2011


I would like to take some time to thank my husband Wes for being the great man that he is. When we first received our diagnosis I felt so helpless and scared. I wondered if I could ever feel like myself again. I remember my mom and my sister kept telling me how fortunate I am to have Wes for my husband. I remember thinking that the only thing that would help me to feel better would be the guarantee that my little girl will be okay. I thought, it didn't really matter who was in my life if my little girl wasn't going to survive this. Now, looking back, I realize how right my mom and sister were. How having him in my life, sticking right beside me has made a huge difference. I was becoming so consumed with doing research and choosing the right hospital for our daughter that I couldn't sleep and wasn't able to focus on anything else. He saw how overwhelmed I was feeling so he began reaching out to people on Facebook, asking questions, and making new friends. This has helped my mind slow down a bit. We have become so positive for our little girl. I know that Cemaia will feel our love for her as well as for each other and this will help her fight harder.

Also, I am very happy to announce that I got an appointment to speak with Dr Galantowicz next week. So we will have a busy week ahead of us. Monday we will be going to UCSF for our follow up echocardiogram, Wednesday we will be meeting with Dr Hanley for a consultation at Stanford and Thursday I will be speaking with Dr Galantowicz in Ohio. So we should make our final decision about where we will be going by the end of that week!!

Thursday, October 13, 2011

Happy, but Frustrated!

Today has been well.....just another day, kind of.  I just got off of work, same thing, got there at six, worked, breaks lunch go home,  but today while on my break (gotta say that) I jumped on my phone to check out my facebook page. I get on and find that I have a friend request, "who the heck is this?" I wondered. Well it ends up that a husband to a woman that I met through a HLHS page befriended me and sent a message that basically offered any help and advise he could give and just general friendship because he and his family have already gone through what my wife and I are facing. This was awesome! I thought to myself what a wonderful thing this was that someone that doesn't know me and has no ties to me and my family would take time to write a message just to make us feel better.
I also thought about the many people that have stepped up in the recent months, my sister-in-law who has been there since we found out about this. She made a facebook page: 'L.I.S.A. 2011 Love Is So Awesome'  for people to post inspiring quotes and positive thoughts for us to look at when we are feeling down.  She has done much, much more and has really been there for my wife and I. We have had other people step up, wives of my co-workers  have been there just to give my wife an ear to talk to and a shoulder to lean on, one gave us a blessed mable for my wife to remember that God will guide us through to the other side when we bring our daughter home, another gave her support and will be taking her to Mended Heart meetings. And although my mother-in-law is dealing with her own medical issues she has been there everyday helping my wife stay positive and making her feel loved, and another of her lifelong friends has kept in contact making sure she is doing well everyday.  All of this is very much appriciated and needed! We thank you all!
This also got me to thinking about the other people that have disappered into the shadows it seems, I'm not sure why....well that's not true, I know why, probably because this is too real, too scary, too hard to deal with, or if it's out of sight it will be out of mind and things will work themselves out one way or another.  I started to think about this and I started to get very frustrated! YES, this is very real! YES this is very scary, YES this is extreamly hard to deal with. We deal with this everyday so no it isn't out of mind, and there is only one acceptable way for this to work out!  If you think this is hard to handle from the outside just imagine how my wife feels from the inside. I feel horrible because I can't fix it and can only imagine the hell she is going through!
I guess this was to be expected, although, I never thought that it would be from some of the people we assumed cared, but for every one person that dissappered we have found a multitude of people that have stepped forward, mostly strangers that out of the kindness of their hearts have opened their hearts and made us a part of their heart family, especially the three familys in Ohio that have opened their hearts and doors to our family, and the others that gave us their home numbers in case a question pops up that needs to be answered,  it really puts my faith back into humanity. For this we are forever grateful!! With their support each day is easier to get through and through their triumphs we become more and more positive for our own baby girl!
I'm sorry if i bummed anyone out by posting this, it just something that has been burning inside of me and I had to get it out.

P.S.  My Job and boss have also been very supportive through this as well!

Wednesday, October 12, 2011

7 months! Keeping things rolling!

Lisa is 7 months pregnant today!! Also Lisa got an appointment to talk with Dr. Hanley at Stanford next week, and hopefully she will get to talk with the Dr. in Ohio soon! Also Cemaia has been moving and shaking a lot today, makes momma happy when she's dancing in her belly which measures 37 inches!

Tuesday, October 11, 2011

Decisions, Decisions!

Today we sent off sonograms to Dr. Galantowicz in Ohio and Dr Hanley in Stanford ca. We also made reservations at the Ronald McDonald house in Ohio for late November, We are looking forward to hearing from both surgeons and we have another meeting with Dr. Azakie in San Francisco at the end of the month. We are talking to many different people so we can make the best possible decision for our baby girl! We are meeting nice families from Ohio that have been through the beginning of what we are facing, this has been a great help for our family and makes us feel less alone and more optimistic! So thank you to all that have welcomed us into your lives! It means more than words can say!

Monday, October 10, 2011

Baby is getting big! Let's Celebrate!

Today we had an appointment with the geneticist at kaiser Modesto. We were glad to hear that all her organs other than the obvious looked great! She is one ounce shy of three pounds and she has extremely long arms and legs! To celebrate we went to the golden corral which was awesome! My first time, then we hit the hobby lobby, less than awesome for me, and a few other places, all in all today has been a great day!


Hello! I am making this blog to chronicle the journey of our unborn daughter Cemaia who has been diagnosed with Hypo Plastic Left Heart Syndrome. I suppose I should start with a little about my wife and myself and then (hopefully) I will or my wife will try to give daily updates about what's going on in our lives and most importantly what's going on in our baby daughters life.
First of all my wife and I met in Feb. 2005 in the grocery store I was working at, after dating for three years we were married in aug of 2008. I know that's not very detailed but this isn't really about us, so I'm just giving the quick version of our life until this point. We live in Ceres ca and have six dogs, two pug mixes, one full pug, an English mastiff, and one chihuahua and a pit mix we rescued.
Ok, now for the important stuff. My wife and I decided this year that we wanted to start a family and seeing as we are both healthy from all the dog walking we never suspected anything would or even could be wrong with the pregnancy. For the first 20 weeks everything was wonderful, we got cloths for our baby girl even when we only suspected she was going to be a girl, we had her nursery all but painted and everything was great.
Then it happened, we went in for her twenty week sonogram and it seemed that the lady doing it was taking forever to get through it and getting kind of frustrated because she couldn't get the angle right, no big deal not like anything is wrong anyway, the geneticist a few weeks before had just got done telling us that everything was great" best I've seen today" he said. Later that night my wife got a call that they couldn't see the left chamber of the heart as well as they would like. I stayed home the next day to comfort my wife and see what the geneticist had to say, it wasn't good, "this is very real" she said, and we had to go back in to get more detailed sonograms. The next few days were tough, hopefully they are wrong, it was the first lady that didn't know what she was doing, it was the angle, or the equipment! any excuse we could think of to make this better we came up with, but it didn't get better, it was worse
than we could have even imagined.
The next few weeks were not good, we went to a doctor in Hayward ca that basically told us that he didn't believe our daughter was going to make it through the pregnancy, not something you should tell a woman scared to death in the first place, but he chuckled it off and said he probably wouldnt ever see us again and good luck with everything, needless to say we never went back to see him even when they told us we were going to have to for updates and sonograms, no we set up all our appointments through UCSF
After going to UCSF we then found out that the cardiologist we visited had thee important measurements wrong, things were not as bleak as we had been told and there was a lot more hope than we thought, this was one of the better days we had in a long time, it's really what we needed to hear, although she still faces a horrible condition it did not mean that we would have to say goodbye right away and we have a chance to bring our baby home.
So far since then my wife has done tons of research about different hospitals surgeons and procedures, she has made contacts with heart families across the country and is making sure our baby girl is growing big and strong for the fight that lies ahead, she is an amazing woman and is going to make a great mother!