OK so nothing really new to report but I do want to reach out again and ask if anyone has any question suggestions for our NICU consult and tour on Oct.5th.
I have already received a few really good suggestions and I am so thankful.
I also wanted to reach out to those who have made comments and ask if you have a blog, and wouldn't mind me adding a link to it, could you post a comment with your blog information. I am new to this blog thing and am still getting use to navigating to other blogs. If you are reading this blog and wouldn't mind me adding a link to your blog please post a comment with your blog information as well. I would love to connect with as many people in the CDH community as possible. I would also like to add links to non-CDH blogs as well.
Prayer requests: Kevin's company has decided to change the way they offer health insurance, so pray that the coverage and premiums will cover Averi's needs and not break our bank accounts.
Pray for Averi.
Thank you so much for your prayers, I really appreciate it I cannot say that enough.
Tuesday, September 29, 2009
Tuesday, September 22, 2009
Doctors appt today
Averi is right on target for 27 weeks and 5 days. She weighs 2 lbs 10 oz. Her heart is still all the way to the right but is functioning completely normal and has a good normal heart beat. There are no compression issues at this time. Her stomach is still right beside her heart and they see a bit of intestines or liver, not sure which one, in her chest cavity. So as far as that goes nothing has really changed. Staying the same is ok. Amniotic fluid looks good. Her kidneys and bladder look good. Her brain and head development are good. She is very active and was moving around alot but they got all the pictures they needed and wanted. We got a 3d/4d pic of her sweet little face and we just feel in love.
My blood pressure was good. I only gained 2 pounds and didn't gain any weight the last 2 months so doing ok there. Honestly, I thought I would have gained more weight but this is good.
The doctors and nurse were extremely informative and personable. They answered all the questions on my list that they could and are setting us up for a tour of the NICU where we can ask the questions that are about the actual hospital and their policies etc.. I am super confident about our decision and feel so fortunate to have had a choice between 2 hospitals. Well, according to our doctor we also could go to Stanford, so really 3 hospitals.
We see the "team" every 2 weeks now to monitor the pregnancy and Averi. My sister Traci has been so kind and generous to help us out with the kids and I praise God for her.
Thank you to all for your continued prayers and support. Thank you to those with question suggestions, they really really helped!!
Monday, September 21, 2009
Questions to ask the Specialist Team tomorrow!!!
Ok, tomorrow we are going to Sacramento Maternal Fetal Medicine and offically transferring care to them with delivery at UCDavis.
Does anyone have any suggestions on what to ask the doctors?????????
I am very nervous and know that things are gong to start moving along very quickly as I am wrapping up the 2nd trimester and moving into the 3rd trimester this week!!!!!!
Continue praying, keeping alert, and always thanking God. Colossians 4:2
Thank you all for your love, support, and continued prayers. I thank God for everyone He has brought into our lives everyday.
Does anyone have any suggestions on what to ask the doctors?????????
I am very nervous and know that things are gong to start moving along very quickly as I am wrapping up the 2nd trimester and moving into the 3rd trimester this week!!!!!!
Continue praying, keeping alert, and always thanking God. Colossians 4:2
Thank you all for your love, support, and continued prayers. I thank God for everyone He has brought into our lives everyday.
Monday, September 14, 2009
Transfer of care
I am 26 weeks pregnant!!! I can't believe how the last 6 weeks have gone by so fast. We have an appointment with Sacramento Maternal fetal Medicine to transfer care.
If anyone has any suggestions on what to ask the specialists, and then for the NICU when we take the tour, please feel free to put them in the comment section.
Your continued prayers are so appreciated.
Prayer requests:
That the specialists will care for myself and Averi adequately.
That Averi's lungs would grow and that her heart will continue to grow with no compression hindering it to do so.
For God to continue to give me peace and continue to teach me to leave Averi in His hands (I am still learning). I tend to worry alot and I am trying to put it all in God's hands.
If anyone has any suggestions on what to ask the specialists, and then for the NICU when we take the tour, please feel free to put them in the comment section.
Your continued prayers are so appreciated.
Prayer requests:
That the specialists will care for myself and Averi adequately.
That Averi's lungs would grow and that her heart will continue to grow with no compression hindering it to do so.
For God to continue to give me peace and continue to teach me to leave Averi in His hands (I am still learning). I tend to worry alot and I am trying to put it all in God's hands.
Friday, September 4, 2009
MRI Results
We got the MRI results. I am SO VERY HAPPY to report that Averi's brain is completely normal and is WITHOUT abnormalities or anomolies. Can I repeat myself, Averi's brain is perfect NO brain damage!!!!!!
This is after being told that she had brain damage and it is always way worse than expected when the baby is born. That we should just terminate because her brain was mush, and it wouldn't be any kind of life for her plus the SUA makes her prognosis terminal, and it would just be easier to terminate. In my heart I knew God had another plan.
Either the doctor's opinion and the ultrsound were wrong, OR GOD HEALED her brain.
Even after the doctor told me that her brain was completely normal, he suggested that we consider "comfort care" once she was born. That we may not want to choose a course that may not change the outcome. I didn't understand what that meant so when the doctor explained I was a little irritated. I knew he was basing his opinion of prognosis on just the 15 babies born with SUA and CDH born at UCSF, and not babies with CDH and SUA born nationally like they usually base prognosis on. So I asked " Those 15 babies did they have other issues seen before birth." He said "yes for the most part". I said "Ok then so far Averi is not like those babies." I told him that we were Christians and we believed God had a plan for our baby. That I was going to give our baby a fighting chance, and if she came home with us, or went home with Jesus, we still needed to give her a fighting chance. He then said "That is an ok way to look it at, but then UCDavis may want you to transfer care here."
The question I continue to ask myself is: Why would I want to deliver where they don't seem to want to fight with me for the life of my baby? And they continue to answer with interaction like the above. On three occassions they seemed to be really irritated at the fact that I want to have my care and baby at UCDavis. Maybe the economy?
I have prayed so many times for God to give me discernment and peace regarding the decisions we make for Averi and her care. I have always, and continue to, feel peace with the decision that UCDavis was going to be where I deliver. They have assured me that they have the expertise and equipment (ECMO) they need to care for Averi. I am going to ask all the questions I need to and make sure that this is the case at our next appointment when the transfer of care is complete.
If anyone has any suggestions about what to ask please please please feel free to post them in the comments section. Any comments are welcomed and we thank you for taking the time.
For all who have offered encouragement, support in friendship, and prayers we cannot express how deep our appreciation goes.
I thank God for all of those he has brought into our lives. God is so good!!!!
This is after being told that she had brain damage and it is always way worse than expected when the baby is born. That we should just terminate because her brain was mush, and it wouldn't be any kind of life for her plus the SUA makes her prognosis terminal, and it would just be easier to terminate. In my heart I knew God had another plan.
Either the doctor's opinion and the ultrsound were wrong, OR GOD HEALED her brain.
Even after the doctor told me that her brain was completely normal, he suggested that we consider "comfort care" once she was born. That we may not want to choose a course that may not change the outcome. I didn't understand what that meant so when the doctor explained I was a little irritated. I knew he was basing his opinion of prognosis on just the 15 babies born with SUA and CDH born at UCSF, and not babies with CDH and SUA born nationally like they usually base prognosis on. So I asked " Those 15 babies did they have other issues seen before birth." He said "yes for the most part". I said "Ok then so far Averi is not like those babies." I told him that we were Christians and we believed God had a plan for our baby. That I was going to give our baby a fighting chance, and if she came home with us, or went home with Jesus, we still needed to give her a fighting chance. He then said "That is an ok way to look it at, but then UCDavis may want you to transfer care here."
The question I continue to ask myself is: Why would I want to deliver where they don't seem to want to fight with me for the life of my baby? And they continue to answer with interaction like the above. On three occassions they seemed to be really irritated at the fact that I want to have my care and baby at UCDavis. Maybe the economy?
I have prayed so many times for God to give me discernment and peace regarding the decisions we make for Averi and her care. I have always, and continue to, feel peace with the decision that UCDavis was going to be where I deliver. They have assured me that they have the expertise and equipment (ECMO) they need to care for Averi. I am going to ask all the questions I need to and make sure that this is the case at our next appointment when the transfer of care is complete.
If anyone has any suggestions about what to ask please please please feel free to post them in the comments section. Any comments are welcomed and we thank you for taking the time.
For all who have offered encouragement, support in friendship, and prayers we cannot express how deep our appreciation goes.
I thank God for all of those he has brought into our lives. God is so good!!!!
Wednesday, September 2, 2009
UCSF MRI
WOW..... this appointment took forever. The appointment was at 6pm. We left at 3pm to make sure we got there on time. We actually got there just before 5pm. So thery took me back early. They started the MRI at 5:30pm. Honestly, I freaked out a little when they put me in the tube. I am a little claustrophobic, and boy when they put me in the tube I thought I was alot claustrophobic. Deep breathing helped, then I calmed down.
It was only supposed to be at the most a 90 minute appointment. Averi was moving around so much that it took until 8:20pm, and she didn't get all of the pictures she needed but most of them. I got one 5 minute break. It was almost 3 hours of laying in that tube, but it was for Averi, so I HAD to do it.
We should have results within the next day or so. Until then, we are so thankful your continued prayers and support.
It was only supposed to be at the most a 90 minute appointment. Averi was moving around so much that it took until 8:20pm, and she didn't get all of the pictures she needed but most of them. I got one 5 minute break. It was almost 3 hours of laying in that tube, but it was for Averi, so I HAD to do it.
We should have results within the next day or so. Until then, we are so thankful your continued prayers and support.
Tuesday, September 1, 2009
Regional Center hearing for Ian
Today I had an inforaml hearing to try and reinstate services for Ian. Ian has developmental delays and has been receiving services from our area Regional Center since he was 2.
He has been in the special education program through the school district since he was 3. He is now in a special day Kindergarten and struggling. Academically he always scores high or right on target, but in every other category (going by assessments done in the past and recently) he is at least 1 year behind and 2 1/2 years behind in other areas.
I wanted to get this all tied up before Averi was born, but now I am not so sure we will get our next hearing before then. Today's meeting was a HUGE waste of time. She basically told me that they were going to deny services and send me a letter confirming that. It may ALL be a waste of time since I received a letter a few days later stating that services we going to be discontinued due to budget cuts if they had not been already.
Luckily, Ian's teacher is awesome and she is doing what she can on her side. I am just praying that this all works out and we get things on track before Averi is born.
For now we are waiting for a state level hearing. Tomorrow we have the MRI, so nervous about that as well. These days I have to pray to keep myself from worrying too much, I worry ALOT so I am getting alot of prayer in.
The name of the LORD is a strong tower; the righteous run to it and are safe.
Proverbs 18:10 NKJV
He has been in the special education program through the school district since he was 3. He is now in a special day Kindergarten and struggling. Academically he always scores high or right on target, but in every other category (going by assessments done in the past and recently) he is at least 1 year behind and 2 1/2 years behind in other areas.
I wanted to get this all tied up before Averi was born, but now I am not so sure we will get our next hearing before then. Today's meeting was a HUGE waste of time. She basically told me that they were going to deny services and send me a letter confirming that. It may ALL be a waste of time since I received a letter a few days later stating that services we going to be discontinued due to budget cuts if they had not been already.
Luckily, Ian's teacher is awesome and she is doing what she can on her side. I am just praying that this all works out and we get things on track before Averi is born.
For now we are waiting for a state level hearing. Tomorrow we have the MRI, so nervous about that as well. These days I have to pray to keep myself from worrying too much, I worry ALOT so I am getting alot of prayer in.
The name of the LORD is a strong tower; the righteous run to it and are safe.
Proverbs 18:10 NKJV
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