Mia Marrone Heart Foundation Pendant

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!