My amazing sister-in-law created a new website for Ellery. I will be posting all future blog posts on it.
Thursday, December 1, 2011
New Website
My amazing sister-in-law created a new website for Ellery. I will be posting all future blog posts on it.
Wednesday, November 9, 2011
"Worrisome, but not hopeless"
Those are the words Dr. Gien told me yesterday after the MRI and the echocardiogram.
I don't really know where to begin, so I will just state the facts as of now:
-The MRI showed she has a severe diaphragmatic hernia: half of her liver is up in her chest pushing her heart over to the right side of her chest, causing her right lung to be significantly smaller than it should be. Her stomach and intestines are also herniated into her chest.
-The echocardiogram (basically an ultrasound of her heart) showed she also has a heart defect known as Ventricular Septal Defect (VSD) and a coarctation of the aorta. Ellery's "left heart" is smaller because of the VSD, because she has had less blood flow to the left. As the fetus grows, a wall forms to separate the two ventricles. If the wall does not completely form, a hole remains. This hole is known as a ventricular septal defect, or a VSD. She also has a narrowing at one part of her aorta which is called coarctation of the aorta. VSD is a very common type of heart defect and is treatable with surgery. However, it becomes more complicated when you throw her CDH into the mix.
-she will have pulmonary hypertension and hopefully that will go away before she leaves the NICU. Otherwise she might have to be on oxygen and medicine for several months and/or a year.
-after she is born they will want to perform the diaphragmatic surgery within the first 3-4 days (so long as she is responding well to treatments). The sooner they can do the hernia surgery, the sooner they can fix her heart.
-after she has healed from her diaphragm surgery she will then have open heart surgery to fix her VSD.
I am overwhelmed by all of this information & feeling emotionally drained. After I had the MRI and echo yesterday, Bryan & I were able to meet with the heart specialist and with Dr. Gien. He told me that it was just another hurdle for her to overcome, but that it was not hopeless. I also read that 40% of babies with CDH also have another complication and of the 40 percent, 65% of those have a heart defect. So, it is somewhat common- just really unfortunate. I am just a little sick about the fact that my brand new baby will not only have to have hernia surgery, but also open heart surgery.
The next step is for me to come back to Children's in 4 weeks and have another ultrasound, MRI, heart echo and meet with the heart surgeon, pediatric surgeon and my team of doctors again. What they want to see in 4 weeks with all of the ultrasounds, etc is that her heart is growing along the lines it should be. So, that's what we will be praying for.
I just want to thank all of your for your comments on my blog and facebook and for all of your prayers in our behalf. The comments really do help and boost me up and help me to feel like I have a large network of supporters through this...so thank you.
I don't really know where to begin, so I will just state the facts as of now:
-The MRI showed she has a severe diaphragmatic hernia: half of her liver is up in her chest pushing her heart over to the right side of her chest, causing her right lung to be significantly smaller than it should be. Her stomach and intestines are also herniated into her chest.
-The echocardiogram (basically an ultrasound of her heart) showed she also has a heart defect known as Ventricular Septal Defect (VSD) and a coarctation of the aorta. Ellery's "left heart" is smaller because of the VSD, because she has had less blood flow to the left. As the fetus grows, a wall forms to separate the two ventricles. If the wall does not completely form, a hole remains. This hole is known as a ventricular septal defect, or a VSD. She also has a narrowing at one part of her aorta which is called coarctation of the aorta. VSD is a very common type of heart defect and is treatable with surgery. However, it becomes more complicated when you throw her CDH into the mix.
-she will have pulmonary hypertension and hopefully that will go away before she leaves the NICU. Otherwise she might have to be on oxygen and medicine for several months and/or a year.
-after she is born they will want to perform the diaphragmatic surgery within the first 3-4 days (so long as she is responding well to treatments). The sooner they can do the hernia surgery, the sooner they can fix her heart.
-after she has healed from her diaphragm surgery she will then have open heart surgery to fix her VSD.
I am overwhelmed by all of this information & feeling emotionally drained. After I had the MRI and echo yesterday, Bryan & I were able to meet with the heart specialist and with Dr. Gien. He told me that it was just another hurdle for her to overcome, but that it was not hopeless. I also read that 40% of babies with CDH also have another complication and of the 40 percent, 65% of those have a heart defect. So, it is somewhat common- just really unfortunate. I am just a little sick about the fact that my brand new baby will not only have to have hernia surgery, but also open heart surgery.
The next step is for me to come back to Children's in 4 weeks and have another ultrasound, MRI, heart echo and meet with the heart surgeon, pediatric surgeon and my team of doctors again. What they want to see in 4 weeks with all of the ultrasounds, etc is that her heart is growing along the lines it should be. So, that's what we will be praying for.
I just want to thank all of your for your comments on my blog and facebook and for all of your prayers in our behalf. The comments really do help and boost me up and help me to feel like I have a large network of supporters through this...so thank you.
Thursday, November 3, 2011
Answered Prayers
For the past six weeks Bryan & I have been praying for Ellery's lungs to grow and for her liver to move out of her chest. Today I had a high resolution ultrasound and there was so much good news! Six weeks ago Ellery's lung was at a .6 Lung to Head ratio and today the Doctor said it looked, at worst, to be barely under a 1 (which is much better) and he thought it could even be well above that! Also, he said he didn't see much liver in her chest at all!! Six weeks ago I was told it looked like the entire liver was in her chest. What a great day! I know it is because of all of your prayers that wonderful things are happening! We just hope things will continue to improve and she will be strong.
I also got to see a 4D image of her face & she is beautiful. I just feel so much peace and am so much more hopeful for her arrival. I know that I am working with the best doctors and am in the right place for her delivery. The Doctor today who did the ultrasound is named Dr. Hobbins and he is a "world leader" in maternal-fetal medicine. He has been practicing for nearly 40 years! He told me that if he was having a child with CDH he would want it delivered at Children's Hospital.
I feel so blessed and really am so thankful to have such a loving Heavenly Father that hears and answers prayers. Thank you for all of your prayers & please keep us in them.
I also got to see a 4D image of her face & she is beautiful. I just feel so much peace and am so much more hopeful for her arrival. I know that I am working with the best doctors and am in the right place for her delivery. The Doctor today who did the ultrasound is named Dr. Hobbins and he is a "world leader" in maternal-fetal medicine. He has been practicing for nearly 40 years! He told me that if he was having a child with CDH he would want it delivered at Children's Hospital.
I feel so blessed and really am so thankful to have such a loving Heavenly Father that hears and answers prayers. Thank you for all of your prayers & please keep us in them.
Sunday, October 30, 2011
Holland...
No, this is not in Holland- Bryan & I went to Steamboat last weekend for a "babymoon" and I thought I'd share a picture of my "bump". I am currently 25 weeks pregnant & have 15 to go. Although, I will probably be scheduled for an induction a week early depending on how Ellery/I am doing.
I found this poem on another families blog that have a baby with CDH and I thought it kind of describes how I am feeling:
I am often asked to describe the experience of raising
a child with a disability--to try to help people who
have not shared that unique experience to understand
it, to imagine how it would feel. It's like this...
When you are going to have a baby, it's like planning
a fabulous vacation trip--to Italy. You buy a bunch
of guidebooks and make your wonderful plans. The
Coliseum, the Michelangelo David, the gondolas in
Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally
arrives. You pack your bags and off you go. Several
hours later, the plane lands, the stewardess comes in
and says "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland? I
signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've
landed in Holland and there you must stay.
The important thing is that they haven't taken you to
a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different
place.
So you must go out and buy new guidebooks. And you
must learn a whole new language. And you will meet a
whole new group of people you would have never met.
It's just a different place. It's slower-paced than
Italy, less flashy than Italy. But after you've been
there for a while and you catch your breath, you look
around, and you begin to notice that Holland has
windmills, Holland has tulips, Holland even has
Rembrandts.
But everyone you know is busy coming and going from
Italy, and they're all bragging about what a wonderful
time they had there. And for the rest of your life,
you will say, "Yes, that's where I was supposed to go.
That's what I had planned."
The pain of that will never, ever, ever go away,
because the loss of that dream is a very significant
loss.
But if you spend your life mourning the fact that you
didn't get to Italy, you may never be free to enjoy
the very special, the very lovely things about
Holland.
written by Emily Perl Kingsley
written by Emily Perl Kingsley
In other news, I have another ultrasound- this time with my new team- this week at University hospital. I will also be meeting again with my high risk OBGYN who will be delivering Ellery. Then on the 8th I will have the MRI and the Heart Echo of the baby. I will then meet again with the neonatologist at Children's Hospital. Please pray for Ellery to have a healthy normal heart and to have lung growth. Thank you all so much for your thoughts and prayers.
Wednesday, October 19, 2011
4 weeks later...
It has been four weeks since Ellery's CDH diagnosis and I'm hoping the rest of the pregnancy goes as fast as these past four weeks. Nothing really is happening- just a lot of waiting for appointments, etc. In 2 weeks I will have an ultrasound and meeting with the OB/GYN that will be delivering Ellery down at Children's hospital. Then the following week I will have the MRI and the fetal heart echo- which I guess is just a really long ultrasound where they focus on the heart and try to see that everything looks normal. We are praying for those tests to come back normal and for more lung growth.
I have been okay, sometimes the facts will hit me and it becomes a little overwhelming. The past few nights haven't been any help either. I keep having dreams about meetings with Doctors and tests that are being done on me and Ellery's CDH and when I wake up I feel relieved that it was just a dream, only to realize that this is really my reality.
I just stumbled upon this talk tonight by Richard G. Scott about The Sustaining Power of Faith and thought it was just what I needed to hear. I really liked this quote in particular:
"God has given us the capacity to exercise faith, that we may find peace, joy, and purpose in life. However, to employ its power, faith must be founded on something. There is no more solid foundation than faith in the love Heavenly Father has for you, faith in His plan of happiness, and faith in the capacity and willingness of Jesus Christ to fulfill all of His promises.
No matter what occurs, no matter how topsy-turvy the world becomes, you can always have the sustaining power of faith. That will never change. The perfect love of your Father in Heaven will never change. His gospel plan gives life meaning and can assure your happiness. His plan is not only to prove yourself here on earth but also that you may receive the growth that comes from correct decisions prompted by faith, enabled by your obedience."
Well, that is all for now. I will keep this updated as soon as I have more information. Thank you for all of your prayers. I know they are helping me and keeping me at peace. I love you all.
Tuesday, October 4, 2011
Children's Hopsital
Yesterday Bryan & I were able to meet with several specialists at the Children's Hospital Colorado. We met with the "CDH team"- two neonatologists, the cardiologist and the OB/GYN. They have just recruited one of the top pediatric surgeons in the country & he will be starting this month. Apparently he studied under the "founder" of pediatric surgery. (So he's kind of a big deal). =) The team was amazing and seemed so organized and prepared for us.
After our meeting we were given the tour of the NICU in both the Children's Hospital and the University of Colorado hospital. The Children's Hospital is currently working on getting the mothers to have their high risk babies at the hospital and it may be ready by the time I am due. If it is not ready, I will deliver at University of Colorado Hospital (which is right across the street). Then, they will take the baby and stabilize her in the University hospital NICU then get ready to transport her over to Children's. Apparently there will be 10-15 people in the delivery room (about 4 for me and the rest for Ellery). Bryan will then go with Ellery everywhere she goes. The OB/GYN told me he'll discharge me from the hospital that night if I'm ready. So then I can go be with Ellery too.
What is also neat about Children's is their NICU- once Ellery stabilizes and starts to improve, they have private rooms with a pull out bed for parents to room in with their babies.
Ellery (depending on how well she does & how she responds to therapy) will be in the NICU anywhere from 6 weeks to 3 months. So, it will be a tough road. I'm not going to be able to hold her for who knows how long. But, all that really does not matter- as long as she is okay, I will be okay. I am just so grateful to have found Children's Hospital. I love the fact that they have done this before many times & seem to have it all down to a science. I feel like coming to Children's was such an answer to prayer.
After our meeting we were given the tour of the NICU in both the Children's Hospital and the University of Colorado hospital. The Children's Hospital is currently working on getting the mothers to have their high risk babies at the hospital and it may be ready by the time I am due. If it is not ready, I will deliver at University of Colorado Hospital (which is right across the street). Then, they will take the baby and stabilize her in the University hospital NICU then get ready to transport her over to Children's. Apparently there will be 10-15 people in the delivery room (about 4 for me and the rest for Ellery). Bryan will then go with Ellery everywhere she goes. The OB/GYN told me he'll discharge me from the hospital that night if I'm ready. So then I can go be with Ellery too.
What is also neat about Children's is their NICU- once Ellery stabilizes and starts to improve, they have private rooms with a pull out bed for parents to room in with their babies.
Ellery (depending on how well she does & how she responds to therapy) will be in the NICU anywhere from 6 weeks to 3 months. So, it will be a tough road. I'm not going to be able to hold her for who knows how long. But, all that really does not matter- as long as she is okay, I will be okay. I am just so grateful to have found Children's Hospital. I love the fact that they have done this before many times & seem to have it all down to a science. I feel like coming to Children's was such an answer to prayer.
Wednesday, September 28, 2011
Thank you...
I just wanted to thank everyone for their kind words and prayers. After I made the blog post on Sunday, I woke up Monday morning & just felt so much peace. I know that is from the power of prayer & I am so grateful for all of your prayers for our family.
I thought I'd give an update on where things stand as of now:
The last few days I have done nothing but research, research, research & I think I know more about CDH than most OB'GYNs. Seriously. It seems like not many people know too much about this. I am so thankful I was able to learn so much (thank you internet) and with all of this newly acquired knowledge I have been able to make lots of phone calls and get answers to the millions of questions I have had.
Yesterday I was able to speak with Dr. Yang who is the pediatric surgeon at Cardinal Glennon Hospital in St. Louis. I also was able to speak with a Dr. Gien, a neonatologist at Childrens Hospital in Denver. I was kind of amazed that these two super busy men would take time out of their day & speak with me and answer my questions.
Dr. Gien (from Denver) was SO amazing & SO comforting to speak with. He really gave me SO MUCH HOPE. He told me that they have seen 18 babies with CDH in the last 2 years and of those, 17 have survived! Amazing! Also, 75% of those babies had the liver up in the chest- just like little Ellery. He also told me that every baby should be given a chance and they would never tell any one that they should terminate their pregnancy. He told me that the numbers I was given do not determine survival or not, all they do is indicate how sick the child might be after delivery and what kind of ventilation, time in NICU, etc. they might need. What a relief. He was the most wonderful person I could have spoken to and told me I need to enjoy this pregnancy because the odds are I will be taking home a baby after this is over. I told him I wanted to hug him.
So, our plan is to meet with Dr. Gien and his team at Children's Hospital sometime next week. Then we will have more ultrasounds, a heart scan and a fetal MRI. It will be a long road, but I am so thankful to have so much more hope and someone who is willing to fight for my Ellery.
My advice to anyone who is dealing with CDH is to ignore your Doctor & talk to someone in the NICU, the neonatologist or the pediatric surgeon. They are the ones that handle these babies, not the OB/GYNs. I wish I would have known that last week.
Thank you for all of your kind words & please keep our family in your prayers. We love all of you!
I thought I'd give an update on where things stand as of now:
The last few days I have done nothing but research, research, research & I think I know more about CDH than most OB'GYNs. Seriously. It seems like not many people know too much about this. I am so thankful I was able to learn so much (thank you internet) and with all of this newly acquired knowledge I have been able to make lots of phone calls and get answers to the millions of questions I have had.
Yesterday I was able to speak with Dr. Yang who is the pediatric surgeon at Cardinal Glennon Hospital in St. Louis. I also was able to speak with a Dr. Gien, a neonatologist at Childrens Hospital in Denver. I was kind of amazed that these two super busy men would take time out of their day & speak with me and answer my questions.
Dr. Gien (from Denver) was SO amazing & SO comforting to speak with. He really gave me SO MUCH HOPE. He told me that they have seen 18 babies with CDH in the last 2 years and of those, 17 have survived! Amazing! Also, 75% of those babies had the liver up in the chest- just like little Ellery. He also told me that every baby should be given a chance and they would never tell any one that they should terminate their pregnancy. He told me that the numbers I was given do not determine survival or not, all they do is indicate how sick the child might be after delivery and what kind of ventilation, time in NICU, etc. they might need. What a relief. He was the most wonderful person I could have spoken to and told me I need to enjoy this pregnancy because the odds are I will be taking home a baby after this is over. I told him I wanted to hug him.
So, our plan is to meet with Dr. Gien and his team at Children's Hospital sometime next week. Then we will have more ultrasounds, a heart scan and a fetal MRI. It will be a long road, but I am so thankful to have so much more hope and someone who is willing to fight for my Ellery.
My advice to anyone who is dealing with CDH is to ignore your Doctor & talk to someone in the NICU, the neonatologist or the pediatric surgeon. They are the ones that handle these babies, not the OB/GYNs. I wish I would have known that last week.
Thank you for all of your kind words & please keep our family in your prayers. We love all of you!
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