What is CHD? Our Reality

It's Heart month, so what is CHD?
I could give you statistics (I'm sure I will later), but for now, I will tell you this...

CHD is awful. It can rip children away from their families in an instant. Your child can be completely fine running around and playing and then, all of a sudden, they're not. They are left fighting for their life and your are wondering, how and why this is happening.

Yes, we always know this is a possibility, that CHD can unexpectedly cause the heart to fail, that it can cause a stroke or cardiac arrest, but that doesn't make it easier to accept if (or when) that does happen.

It's never far from our mind. Yes, we live life to the fullest. We take many vacations to Disneyland because that is her most favorite place in the world. They treat her so well there! She does ballet, hip hop, choir, excels in school and volunteers at the animal shelter. But we know not to get too comfortable. We know that life can change in an instant, that one respiratory virus could attack her heart, one cardiology appointment can deliver devastating news, and one phone call can change everything.

Your child can fight so hard through surgery and beat all the odds, and yet, CHD can take them when they are doing so well.

We grieve together as a community because we have come to know and love other heart families, we share their struggles, and we know that at any moment it could just as easily be one of us.

We try to live life like there will be a tomorrow, but in the back of our mind, we often wonder. So, we may give in to them too often at bedtime, because 'what if they go to sleep feeling sad and they don't wake up in the morning?'

We check on them throughout the night, listening for breathing as we place our hand over their heart to feel it beating.

We want a life full of love and wonderful experiences amid all the tough times. We make the best out of each hospital stay, we hide our tears and sometimes blame our watery eyes on allergies, and we form incredible bonds with their doctors and nurses.

We want a long life for our children. CHD Awareness is so important because their hearts matter too. There is no "better place" for a child to be than in the arms of a loving parent.

Please help us raise awareness. Our children's lives depend on it.

I finally broke and felt defeated by HLHS Aug 2011 (Then & Now)

Then:

August 26, 2011 was the most difficult day in 2011! We went to see the "highly respected" and "best cardiologist in the area" - according to Kaiser.

We were hopeful that we would hear some good news…maybe...the left side had grown significantly, it wasn't HLHS it was "just" one of her valves.

The cardiologist was completely silent during the fetal echo. I wanted to ask him a million questions, but I wanted him to concentrate and be thorough. When he was done he asked if we had any questions. I had done a ton of research so we asked a lot of questions about the first surgery, (the Norwood) and about interstage. We asked if we should be prepared to bring our baby home on oxygen or a feeding tube. He kind of laughed at me and said "We aren't going to send you home with a fragile NICU baby." When we were about done asking questions the doctor began adding additional problems…Restricted Atrial Septum, Aortic Atresia, Mitral Atresia… giving us measurements of Cemaia's heart. The one measurement that stuck with me was the size of her aorta (0.8mm). I knew that sounded extremely tiny. Based on my research, I knew that the typical size of an aorta is 4mm and the "typical" HLHS aorta was 2mm. This was scary…I asked if there was a chance it would grow by the time she was born. He said that it wouldn't grow and that she wasn't getting any flow through her aorta. The only flow he saw was going backwards. This meant (according to him) that her aorta wasn't being used so eventually it would shrivel up and her heart would stop. 

Did we hear that right??? And then he said "YOUR BABY WILL NOT MAKE IT THROUGH THE PREGNANCY."

We were completely crushed. We didn't have any words, we just looked at each other ready to just fall apart. We asked if he thought there was ANY chance whatsoever that she would survive and he kind of laughed and said "Huh, well, I guess anything can happen." Then added that this is the worst, most severe case of HLHS he's ever seen so we should think about our options and prepare ourselves to say goodbye. He left the room to give us a minute to talk. We could barely look at each other and just cried. As I was sitting there I felt so devastated and then I just thought, 'he's wrong…He has no idea what he's talking about…This just isn't going to happen.' I was in denial yet again!

I elected to do the driving home because I knew I had to keep it together to drive…I didn't want to loose it until I got home. That drive home seemed to take forever!

When we arrived home I went straight to bed and just cried. I finally let myself break. I'd been holding it together for the last 10 days…trying to stay positive and hope and prayed for the best. I felt completely defeated. As if I was given a death sentence myself. 

I stayed in bed ALL DAY. I became even more obsessed with research. This time, rather than researching heart structures and surgeries I was on a mission to find other families who have children with the same condition. I needed some hope to hold onto.

I didn't find anything until I came across a blog about a little boy name Bowen. Bowen has HLHS and Bowen is alive!! I saw that his dad is the lead singer of Sanctus Real and I found the song that filled me with more hope than I thought possible. 'All of Me' It made me cry, but it filled me with peace, I felt strangely calm. I knew that I already loved Cemaia so much and that my love for her would grow each day. She is definitely worth "every fallen tear" and "worth facing any fear." She would have "all my love, even if it's not enough." and I will give her "All of me."

Now

We've had a great month! We were able to stop one of Cemaia's diuretics (Aldactone) and she has handled being weaned down from her Lasix. In April of 2013 Cemaia was maxed out on her Lasix dosing, but still wasn't peeing very well. So far she is maintaining on nearly half the dose she was on previously and is peeing better than ever!

We are so proud of her.

This month Cemaia was able to visit the beach for the first time! She loved seeing all of the birds fly around, but wasn't too fond of the sand.

Cemaia has also been preparing for football season. She is ready to cheer on her team :)

Two Year HLHS Diagnosis Anniversary

Wow! August 19th 2011 was the day we were officially diagnosed with Cemaia's HLHS and I didn't even remember all day (until bedtime) I was dreading the month of August because I've been worried about how I'd feel when thinking about each of these difficult days. This month has been pretty good to us this year though!

Then: Aug 19, 2011

We had our 20 week ultrasound on Aug 16th. It was then that we were told that they couldn't see the left side of Cemaia's heart. I asked the doctor "is that even possible" - to be born without half of your heart. She said it's very rare but it does happen. "BUT do they survive???" is what I really wanted to know. Our OB couldn't give me any specifics…I had to wait. I would say that was the hardest week of my life, but a more difficult week would await us very soon. Wes took the rest of the week off from work to be home with me. I received a call the next day (a Wed) and I remember making up every reason why this wasn't true…Cemaia was in a difficult position, the ultrasound tech was just new, the machine must've been old and not working properly…" But the doctor kept repeating "this is very real" 

She set us up with an appointment for that Friday (Aug 19)

We were very hopeful that we would hear good news…It can't be as bad as my research would indicate it is. Maybe these doctors could tell me about great advancements that were taking place??

When we first arrived, we were greeted by an ultrasound tech and 2 doctors. One had a lot of info on HLHS, surgeries, statistics…and was quick to discuss our "options" while the other doctor seemed afraid to give us the exact HLHS diagnosis. It was as if he just didn't want to be the one to give us such a devastating diagnosis.

While the first doctor continued to explain why termination would be "the best" option...For us, there was only ONE option…continue with the pregnancy and continue to show Cemaia just how LOVED she is and how much she is WANTED.

Now: Aug 19, 2013

Cemaia and I enjoyed the day together while daddy was at work. She played in her playroom and we worked on strength building exercises. She has been making a lot of progress and is gaining more confidence. When Wes got home we took Cemaia to see the neighborhood cows and horses. She asks to see them all day! It wasn't until bedtime that I realized that 2 years ago today was our official diagnosis day. I had thought about it all month in July, but we just lived life and had fun. I never thought that I'd be able to forget about these type of milestone days...at least not this soon.

As you can see by Cemaia's face...the cows were smelly :)

Re-Introduction

Cemaia was born in December of 2011 with Hypoplastic Left Heart Syndrome. She also had a Restricted Atrial Septum, Aortic Atresia and Mitral Atresia. Her aorta was severely hypoplasic, measuring at .8mm

Cemaia is now 20 months old!

I know how important it is for newly diagnosed HLHS families to find stories that give them hope for their new little baby. I searched the internet for hours when I was pregnant and first diagnosed with Cemaia's special heart. Our doctors were very negative about her diagnosis and encouraged termination. I found scary statistics online and reading about the Norwood procedure made me nauseated. I tried so hard to find other children with HLHS who were thriving. I needed some hope to hold on to. So I'm hoping by getting back to writing in our blog we can bring hope to some families.

I've been disappointed that I haven't kept up on the blog because I would really like for Cemaia to be able to read through it someday like a journal. So my goal is to write 'Then and Now' blogs. It has been 2 years since we learned that we would become Heart Parents. So I would like to take you all through our journey and blog about what was happening during the scariest time in our lives (pregnancy, surgeries, hospital admissions, interstage…) while also celebrating where we are today. 

Thank you for following our little girl's journey! 

It's been a LONG year, but is't been worth every second!

Hey!  We're back!  Sooo sorry that we haven't been updating this blog like I've said we would over and over again.  I'm lazy.....what else can I say?  ha ha.  As we sat here watching the horror on TV in disbelief of the evil of one man I look at my daughter and start to reflect on the incredible year we have gone through and how incredibly blessed we are to be spending our first Christmas and her first birthday with her.  It's hard to believe that a year ago this month we were going to the McDonald house awaiting a life that scared the hell out of us because we didn't know if we would get to enjoy or even experience it.  With a few bags packed, a computer, my wife at my side and my daughter in her belly we walked through those doors with no idea what was going to happen next. That Christmas was the most incredible I have ever experienced!  I have never been around such generosity and selflessness in my life.  The people we met and the staff that works there will always have a place in our hearts and we will NEVER forget the time we spent there.  From the moment my daughter was born until this very second she has consumed every aspect of our lives and we wouldn't have it any other way.  She has shown us how strong she can be through two open heart surgeries, how smart she is, learning EVERYTHING that momma challenges her with from body parts to sharing to animals and their sounds! (I'll post those videos too!)  and how loving she is to her parents.......she's sooo sweet!  I've also watched my beautiful wife struggle against stubborn cardiologists, rough nurses, hard headed family members, and watching her daughter deal with everything and after all of it she still has tons of smiles and love for her daughter and makes everyday wonderful for her!  You can see her wonderful dedicated work in our daughters smile...and she smiles ALL the time!  I can't say enough how much respect I have for my wife and how much more I love her each day!  She is the strongest woman I have ever met and I know in my heart I get my strength from her,  without her I know I would just fall apart!  Since our last post many things have happened and Cemaia just keeps getting bigger and stronger!  I just can't keep up with everything she can do and everything she has accomplished.  We are going to try and go through our notes and do a more specific year in review for you....I know I know......"you've said that before."  Can't say trust me we will, but trust me we will this time lol.  I guess the most recent things that have happened for our family started in November when we all got sick, that was horrible.  I never thought that we could have caught such a nasty virus at a pediatricians office,  what we took away from that little stunt was next time we don't like something SPEAK UP!  We can never be too careful when it comes to her health!  Although Cemaia got over it like the super warrior that she is, it never should have happened in the first place.  Since then momma has been working with her like you would not believe and Cemaia now knows a lot of her body parts,  she can pick up certain animals when you call them out, and just to show off she can pick them out by the sounds they make.  Yes  we have videos of her doing all these thing in case you might have some doubts, and yes, she's only 11 months old!  BOO YA!!  Also we have had a series of good cardio appointments and so far her heart seems to be doing well and getting stronger.  We have started the process of getting some second opinions from CHOP and Boston Children's Hospital.  We look forward to what they have to say, we'll keep you posted!  This year has been the longest, scariest, most wonderful year of my life! We can't wait to enjoy Christmas with our beautiful, strong, exceptionally smart heart warrior princess, and then just a few days later our special gift turns one!  Good times!

Cemaia's Glenn

We made this video right after her Glenn.  I heard this song the night before her Glenn and I had to make a trip to target.  It seems that I was really stressing about everything and when I got back into the car as soon as I turned the key this was on the radio.  I only caught the end of the chorus but when I did it really spoke to me.  As soon as I got back to Lisa I found the song and played it for her, she loved it too.  It's true that when you need it most God will send you a message if you are open to hear it.

Cemaia At Home!

Well I know it has been forever since we have given any attention to this page and we are very sorry. Since the last time Cemaia has had her Glenn and it's been about 4 months since.  She is doing well, although there have been a few scares along the way. I hope you enjoy the video and we will definitely make a stronger effort to keep this page updated.  Thanks again for all the support from those who have given it....you know who you are! We are also publishing this to YouTube so you can see it on your phone if you can't see it here!

Cemaia's Glenn Video Round 2

Sorry I have been lazy posting what is going on with our little warrior lately, well through the last 5 months to be exact. Here is a little video Lisa made to show how well Cemaia did through this round. To date our little one continues to amaze us and is doing quite well, although she is teething at the moment she is otherwise a very smart, strong, and extremely happy baby and we feel very blessed to have her in our lives!     

Home and Happy!

This is a Video of our little fighters first weeks at home!

First Video! From NICU till NOW

sorry it's been so long since we wrote anything, we will be updating everything that is going on soon (i hope) but we did make this video to show some of the scenes that we have seen through the first part of Cemaias journey! We hope you like it and I hope it works : )

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!

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.

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!

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.

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.

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 :)

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!

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!

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.