A few weeks ago we sent Nora’s medical records out to 3 different hospitals based on the advice of a couple of other families in the t18 community. We are in quest of second opinions about Nora’s heart as it relates to her pulmonary hypertension (the reason for her oxygen tubes). Nora’s case was taken before the board at Cincinnati Children’s and it was concluded that Nora would not be a good candidate for heart surgery at this time. We were okay with that and the explanation that was given to us. However, this is our daughter’s LIFE we’re talking about. Of course we were interested in some other opinions just to make sure we have all of our bases covered. We have heard back from one of the hospitals. The doctor that William spoke with yesterday still has to bring Nora’s case before the board at his hospital, but he is of the opinion that Nora would be an excellent candidate for heart surgery. I won’t go into all the specifics, but basically it was a really good conversation. William said this doctor didn’t sound wishy washy about it – he very firmly stated that Nora would benefit from surgery.
(deep breath) We’re still anxious to hear from the other 2 hospitals, but this is definitely something we’re going to pursue. Yes, I am scared to death. It’s tough to reign my thoughts in from going there from trying to imagine what that whole experience will be like. I do feel like we are being led in the right direction. There are just lots of hills and curves and it’s impossible to see around every corner. While I’m humanly afraid, I am reminded of all the other times I was terrified out of my skin. Each and every time, without fail, God delivered us through the storm. I don’t doubt that this time is going to be any different.
Running low on sleep, so I will conclude with pictures! 🙂
We enjoyed this beautiful day at a park by the river.
Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.
(Romans 12:2 NIV)
I think that was great advice to get another opinion. My Mary who has Trisomy 21 had to have open heart surgery at 3 1/2 months old and 6lbs. They wanted to wait till she got bigger but it became necessary to do it sooner. I just made a meal for a family I just met who were told to not do surgery but then got a second opinion and just had it for their 7 month old with DS. If you end up going that route it is helpful to here the details of it from other parents who have gone through it and maybe even see pictures of what the first day postop looks like. A mutual friend did that for this family I mentioned and she said that helped a lot. It is encouraging she is a good candidate. My Mary had Pulmonary Hypertension also and was on oxygen before surgery night and day and then after for a bit and gradually weaned to just at night and then off completely even when sick! Her lungs healed and she no longer has Pulmonary Hypertension. It is so scary to face that surgery but remarkable what it can do and how fast they can recover from it.
OH MY GOODNESS!! WHEN I STARTED READING YOUR BLOG, AND IT STARTED OUT SURGERY, I FELT LIKE I WAS GOING TO GET SICK TO MY STOMACH. I KEPT READING AND THE MORE I READ, I GOT EXCITED. I REMEMBER SEVERAL BLOGS AGO YOU TALKED ABOUT HEART SURGERY, BUT THE DOCTOR WAS NOT SURE IT WOULD HELP. I HAVE READ A FEW ARTICLES ABOUT BABIES THAT HAVE HAD HEART SURGERY, AND ALL OF THEM DID VERY GOOD. I HAVE BEEN PRAYING FOR GOD TO HEAL NORA SO SHE COULD BREATH ON HER OWN AND GET RID OF THE OXYGEN. AS I READ YOUR BLOG I COULD NOT HELP BUT TO ASK GOD IF THIS IS THE ANSWER. I CANNOT SAY I HEARD GOD SPEAK TO ME, BUT I CAN SAY I FELT A CALMNESS. THIS HAS TO BE SO HARD ON YOUR FAMILY, AND I AM GOING TO START SENDING A LOT OF EXTRA PRAYERS. I AM EXCITED FOR YOU GUYS, AND AT THE SAME TIME FEEL BAD THAT YOU HAVE TO FACE THIS. IT SOUNDS LIKE NICOLE HAD SOME PROMISING WORDS AND GOOD ADVICE. SO GLAD SHE WAS ABLE TO SHARE HER EXPERIENCE WITH YOU GUYS. I PRAY THAT GOD GIVES YOU ALL THE STRENGTH TO FACE ANYTHING THAT MIGHT BE IN THE NEAR FUTURE. COULD IT BE THAT BY CHRISTMAS NORA’S OXYGEN WILL BE ABLE TO BE PUT AWAY? WHAT A WONDERFUL CHRISTMAS PRESENT THAT WOULD BE. PRAISE GOD FOR ALL HIS GOODNESS. HE WILL BE BY YOUR SIDE THROUGH WHATEVER COMES ALONG. LOVE THE PICTURES OF ALL THE FAMILY AT THE PARK. I AM GLAD GRETA SPOTTED THE 3 BIRDS ON THE LINE. I LOVE YOU ALL AND I HOPE YOU GET A VERY GOOD NIGHT’S SLEEP. I AM GOING THAT WAY MYSELF. WITH THAT I WILL SAY GOOD NIGHT AND GOD BLESS.
WELL HERE I AM AGAIN, I FORGOT TO COMMENT ON THE ONE PICTURE OF NORA IN HER STROLLER. I THOUGHT THAT YOU HAD PUT SOMETHING ON THE FRONT OF THE STROLLER, IT COULD BE HER GUARDIAN ANGEL WATCHING OVER HER. I LIKE THAT YOU THOUGHT THAT WAY. I REALLY AM HEADED FOR BED THIS TIME.
That most DEFINITELY looks like an angel wing! Prayers for clarity, peace and continued positive feedback from the physicians involved in her case.
Good Morning…. Our baby, now at 25 weeks was diagnosed with Trisomy 18 at our 20 week ultrasound with a follow-up amnio. At first, there was total heartbreak and despair because I was hearing nothing but bleak outcomes for our little boy. Over the past couple of weeks I have been reading and finding more stories of hope for these little miracles. Someone who came across my blog directed me to yours and I am thankful for her and for you! We are waiting to see what the Lord’s plan is for Josiah, but he is strong and kicking so I am encouraged by Nora! Thank you!
Well done, Aleisa!!. Boston/ Philly/ Texas are the best in cardiology/ heart surgery according to my boyfriend who did his residency and fellowship at MD Anderson & Texas Children’s. One of his colleagues (cardiac surgeon) worked at Boston Children’s several years and now works in his hospital. If you need anything, let me know. Tons of kisses 🙂
How is Nora like the great missionary St. Paul? She brings the Lord to those who meet her. I guess it might not just be via technology! At any rate, whether Nora remains home or travels, she is just the yummiest testimony to love.
Have no fear. God’s plans for Nora are already made. He knows the outcome. She is wonderfully made by him. Every cell. Every chromosome.
So happy to hear that the news!
Romans 12:2— The verse you ended with- I can not tell you how much I needed to see that today. God is good– so good. Thank you for sharing your story and being an inspiration to all.
It is strange but true that the exact Cause of Primary Pulmonary Hypertension is yet to be ascertained. However, researchers in this regard suggest that certain diet drugs (appetite suppressants) can make a person more prone to developing this fatal condition.Primary Pulmonary Hypertension is basically a disorder of the blood vessels wherein the pressure in the pulmonary artery rises above normal levels, thereby posing a life-threatening risk. Several diseases or causative factors, largely unknown, may lead to the malfunctioning denoted by the term Primary Pulmonary Hypertension.;
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