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 :)
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, November 22, 2011
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!
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.
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.
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