Congenital heart defects are the most common type of birth defect, affecting 1 out of every 100 infants. Hypoplastic Left Heart Syndrome (HLHS) accounts for a small percentage of all heart defects, but remains one of the most common causes of death in infants with congenital heart desease. Typically children with HLHS get 3 open heart surgeries. There is hope and more and more CHD warriors survive each year!
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!
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.
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.
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.
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