Tuesday, March 8, 2011

A Day In St. Louis

Today went really well.  I am so glad we chose Saint Louis.  They have a Down Syndrome Clinic that is amazing.  All of our appointments are coordinated and right after the other.  We never leave the room, the doctors come to us!

First, we met with a genetic counselor.  She went over the karyotype results for Miss Ollie.  We knew from her FISH test (a rapid results test of 100 cells) that Ollie has Trisomy 21.  However, we didn't know what kind.  That took a longer test that took about 2 weeks for results.  There are 3 types of Trisomy 21.  Ollie has the most common type, Nondisjunction.  This means that every cell in her body has 3 sets of the 21st chromosome.  This type of Trisomy 21 happens purely by chance, and isn't genetic.  This extra chromosome is present at pretty much the first division of cells - it is an immediate thing.  Now that I have Ollie, I don't think she happened by chance.  She's a tiny slice of heaven that most people don't ever get the luxury of experiencing, she was 100% God's plan.

Then, we met with the head doctor that runs the Down Syndrome clinic.  She looked Ollie over and thinks she's doing great.  She had a concern because Ollie's hips "click" so she requested a hip ultrasound as a precaution.  She thinks it's probably due to the low tone and loose ligaments common to Down Syndrome, but she wanted to be sure that was the case.  I am not too worried about this, but I'm anxious to get the results.  We will then revisit her in 6 months for a checkup, Thyroid check, & eye screening.  I'm relieved about the eye screening with Aubrie needing glasses so young!  Ollie also has very watery eyes, she thinks Ollie will grow out of this, but if not we can have an eye check in 3 months if needed.

After she was done we met with some people from the Down Syndrome Association - they are fabulous & wow it kind of makes me wish we lived even closer to St. Louis.  They put on some amazing events, and fundraisers.  Luckily, we are just close enough to take part in the future!


Then, in came our cardiologist.  This was the first time we met Dr. Johnson.  He was fabulous.  He's quiet and kind of timid, but we felt very confidant in everything he had to say about our Miss Ollie.  He was fabulous!  He thought she looked great, and was happy with her weight gain - up to 8 pounds 2 ounces - can I get a woot woot?  He wanted to do an echocardiogram to check her heart because the last one was right after birth, and things change as the baby grows.  After the echo (which the tech today was amazingly accurate & fast) he discussed the results with us.  Things pretty much look the same.  The hole between her atriums is moderate, and the hole between her ventricles is large...the word large sucks.  He felt she was doing really good, but perhaps is in the beginning stages of heart failure.  He thought she was "tugging" a bit when she was breathing.  In addition to this, yesterday she had an odd day.  She was awake a lot and ate just about all day.  Typically, it was just every 3 hours or so.  Then during the night she usually wakes me up every 3 hours on the dot to eat.  After 5 hours - I awoke in a panic & had to wake her up to feed her.  We aren't sure if this is the start of heart failure - or just the result of a baby that played too much yesterday.  So, he's starting her on Lasix once a day.  This is a medicine that helps remove fluid, so if this is the onset of heart failure, it should help.  We are to see him again in a month in Mount Vernon where he travels.  It's a bit closer to home for us.  If anything changes, we are to contact him and go from there. 

Right now Dr. Johnson is guessing Ollie will have her open heart surgery at 4 months.  That would be June-ish.  I have a lot of emotions about the surgery.  I'm excited that she will be fixed and will have a healthy heart.  I'm so anxious to meet her post surgery personality - I've been told it's like a second birth.  I am scared to death of the worst.  I can barely think about what surgery day will be like without tears.  The thought of her tiny body in the Cardiac ICU that we toured & having to leave her for 10 seconds to use the bathroom or God forbid leave for the night to sleep - gives me a belly ache.  Some how it is the best & worst things you can imagine for your child - all rolled into one.


I have a lot of praying to do until June!  I am very confidant and comfortable with our cardiologist & St. Louis.  I need give my worries over to the Lord, and have faith that in time, everything will be OK.  That by the 4th of July we will be celebrating bigger than we ever have before.  God is good all of the time & he continues to bless my family time and time again!





PS - please say some prayers for our friends & their 10 week old baby girl, Ava.  They are from our hometown & also in St. Louis today.  Ava, has a heart cath tomorrow.  Pray that this procedure is all that she needs, and pray for strength for our friends.  This heart business is tough stuff, it takes grown men to their knees.  Tomorrow is an everything in the world kind of day for them. 

18 comments:

  1. Yay and woohoo! I'm so glad she's getting so big so fast! Thank goodness for those great docs in St. Louis!

    ReplyDelete
  2. Just so you know-- I'm doing a jig and saying woot wooooooot!!! My kids might think I'm nuts!! Naaa they will join in!!!

    ReplyDelete
  3. Woot! Woot! I can't get over how much she smiles!!!! She's just a joy...I can tell just from the pictures. You're not praying alone, my friend! We're all still praying too!!!! Glad your day went so well!

    ReplyDelete
  4. oh my goodness that picture is just too much! Makes me all giggly with how perfect she is! I can't even imagine the mixed emotions over her June surgery. My daughter had 3 surgeries in her first 4 yrs. of life (none this extreme), and I know just how intense the time leading up to The Day can be. I really feel for you. And your friends. Many prayers are going up tonight.

    ReplyDelete
  5. So happy you had great results today! God is awesome and I know you all feel so blessed!

    ReplyDelete
  6. Yay! Glad that things are going well for all of you! Ollie is beautiful!

    ReplyDelete
  7. Three cheers for a happy day and lots of positives to report! We come from a long line of weepy eyes and clicky hips and just cannot get OVER how incredible that girl of yours is doing. Way to go, SuperFamily!!!

    ReplyDelete
  8. She is such a doll. She was having an extra growing spurt already. Thats why she was eatting alot and then sleeping extra.. :)

    Still praying
    Erika

    ReplyDelete
  9. Oh my gosh, you guys have been on my mind all day. I was so happy to come home and read this post. :) I'm so happy with the good news that you got! June will come and before you know it, so will July and it will all be behind you and Miss Ollie will be all healed and ready to rock!

    Hugs....

    C.A.

    ReplyDelete
  10. Ollie is the prettiest little thing.
    Yeah that her weight is picking up so well! And yeah that you are happy with the Down Syndrome clinic and your cardiologist. We'll all just keep praying. I pray right now especially for peace for you.

    ReplyDelete
  11. Love, love, love the pictures! Glad you had such a good visit to the clinic and cardiologist. Sounds like you've got a great team behind you! Sammi's joints (wrists, knees, etc.) used to click, or crackle. The sound made me cringe. Eventually it stopped, not sure if it was because of PT or just general body development, but joint laxity is so common in our kids. Glad she's starting on lasix and that they're still looking at the 4 month mark for her surgery. ((hugs))

    ReplyDelete
  12. Great news that it was a good visit! Bailey's cardiologist is also a Dr. Johnson - we just have more and more in common! We just met with the surgeon that will be doing Bailey's OHS at the end of this month and got lots of details of the surgery/hospital stay. One thing that I didn't realize is that at our children's hospital, we can stay in the PICU with Bailey - she has her own little room and there is a pull out bed. I was picturing it to be like the NICU with many baby beds lined up in a row. That really put my mind at ease to know that we will be able to stay with her, so perhaps your hospital will be the same way, and that will be one less thing for you to be anxious about. God is GOOD and sweet Ollie will do so well! I've had a few mamas that have gone through this lately tell me that this part leading up to the surgery is by far the worst part, and the surgery/recover were easier than they were anticipating. Many prayers will be lifted up for miss Ollie as her surgery date approaches. Hugs!!

    ReplyDelete
  13. So glad to hear that things are going well for you guys!

    ReplyDelete
  14. she's just perfect. so glad you are close to so many amazing professionals. praying peace over every med issue right now...that the God of healing will reassure your heart and cover her with HIS hands.

    ReplyDelete
  15. that baby of your sure is scrumptious:) i am so happy your appt went well and you are getting some answers.you all are are in my prayers as well as your friends little one.I cannot even imagine going through someting like this.You guys are so very strong and brave.

    ReplyDelete
  16. Hi just writing to tell you a bit about our experience with our daughter MaKaylee who is 2 now that was born with a common/complete av canal. This is a very scary thing but you will be very suprised how resilient they are. We planned on a 2 week stay and was home in 6 days and spent 3 in ICU. MaKaylee also had watery eyes they said if this had not stopped by 1 yr. that they would need to do surgery to clean the tear ducts so in January we had a surgery that lasted 15 min. and went home that day. What a blessing it is to have and raise such a sweet spirit. We will look forward to following Ollie's Story. I am not a great blogger but u can look us up at jmzitofam.blogspot.com.

    Mikki

    ReplyDelete
  17. Woot. Woot and prayers for Ava. Annie how wonderful that you have found such a tremendous team of doctors that you trust and have confidence in. They are so gifted and specially trained that it is certainly divine intervention that you have found them and feel so good about their abilities and how they will care for Miss Ollie.

    What an awful lot of stress to have to deal with, but I know you have such a strong, positive spirit and such a great support system with your family and friends.

    Ollie is special and she has a great life ahead of her.

    Ann {{to all of you and Olllie}}

    ReplyDelete
  18. Hi annie! Not sure if you remember me :( I've been MIA for a long time. Your daughter is so beautiful, you are so blessed, cant wait to follow along again :)

    ReplyDelete

Thank you so much for your kind words & support! I love hearing from you & read each and every comment you leave for me! ~Annie