Hi!  I’m new to this sort of thing… blogging.  Anyway, Emma is our third child, we have 4.  Three girls and a boy (Dakota-7, Andrew-5, Emma-3, and Lila-will be 2 this month)!  We had a normal pregnancy until about 20 weeks when the ultrasound showed that she was small and her heart was skipping a beat.  My wonderful OB sent us to a specialist where they discovered she had a 2 vessal cord and was still pretty small, in about the 2nd percentile.  The pediatric cardiologist looked at her heart during the ultrasound and it was normal.  It was no longer skipping a beat.  The specialist thought that we should have an amnio since there was a 5-10% chance that she had a chromosomal abnormality.  I decided not to have the amnio because even if she did have something, I was NOT going to terminate and if she did, I didn’t want to worry about it for the rest of the pregnancy.  I knew that for me, knowing wouldn’t help anything.  Besides that, a lot of people were praying for us and Emma, and I truly felt that was God was telling me that she would be fine and I had peace about that!  We continued to see a specialist often as well as going to my normal prenatal appointments.  Towards the end I was going in twice a week, for a non stress test or ultrasound and to my regular prenatal appointments.  There were many things that popped up here and there on ultrasound, like fluid around the heart and too much or little amniotic fluid but they all resolved.  In mid December, the doctors decided it may be a good idea to induce early (15 days) to see if she would grow better outside the womb.

So I was induced on December 18, 2006 and miss Emma Noelle was born at about 6:30 in the evening.  She was a VERY tiny 3 lbs 11 oz and only 16 inches long!  The placenta looked a little weird so they sent it to pathology.  The pediatrician ordered a chromosome analysis since she was so small, which didn’t come back until the beginning of January.  Emma stayed in the hospital until Dec. 26th.  We had to wait until she could maintain body temperature and gain weight.  She hung out in an incubator-like thing for most the stay, but we were taught how to unhook her and take her temperature so we could get her out and hold her whenever we wanted!  She had a little trouble eating in the hospital, but figured out the bottle well enough to gain, and came home with no tubes!

The results of the chromosome test (FISH) came back finding that she had WHS, which her pediatrician had never heard of before.  We came home with printouts off the internet and a list of specialists to see.  When we went to the geneticist, I left feeling like we were going to have a vegetable baby and I told God that this didn’t seem like “fine” to me.  It was scary and I was really sad and unsure about the future.  As time went by though, and we got to know Emma and see her cute smiling face and her sweet personality, I discovered that she was “fine”.  It’s just that God’s definition was different than mine- and that was okay!

She had an NG tube at 4 months (because she took a dip on the growth curve) and after 3 months they put in a G tube.  She had ear tubes placed in November of 2007 because she had a ton of fluid in her ears.  She sees a cardiologist for her ASD, which she had repaired via open heart surgery July of 2009.  She has developmental hip dysplasia in her left hip and has had a closed reduction and spica cast for 9 weeks in Oct of 2008, then a osteotomy (they put a metal plate in her femur) and a spica cast for 3 weeks Oct of 2009.  She gets the plate out in the fall.  She had 2 febrile seizures when she was 13 months, but that’s all they were and hasn’t had any since.  They did an EEG and an MRI, which were normal!   She takes prilosec to help with reflux.  I think that’s all for medical stuff! 🙂

Developmentally, we are very happy with how she’s doing!  It’s slow, but constant!   She is now walking about 12 feet or more all by herself!!!  She makes a lot of noises, but doesn’t actually talk much.  She makes a noise like woof when she sees a dog, or hears the word dog.  And it sounds like she tries to say “bath” and “book” and also makes a noise like yea when we ask her questions. She is learning a lot of signs and can do 5-10 by herself and a lot more if you ask her to. She also does some motions to songs!  She gets all her nutrition via G tube, but is finally starting to be interested in food!  She puts it to her mouth and it makes it in sometimes, but most the time she drools it back out.  We know that she CAN swallow because she doesn’t drool constantly, but we don’t think she understands the process of eating.  We’re hoping that she can learn that with the therapies she’s getting ready to start at the hospital once a week.  She hates having her teeth brushed as she is very oral sensitive.

Emma loves people and is certainly not shy, except maybe around doctors!  She’ll walk clear around the church, holding onto people’s hands or legs, if we let her!  She’s mostly very happy and goofy and loves to play near her siblings!  She loves baths, books, swinging, being around people, and making messes!  Emma is sweet and amazing and we love her so much!  Her Daddy and I think we have a pretty special family and feel very blessed!  It hasn’t been easy, but we have our faith in Jesus, our family,  our church family and good friends which have made it all good!   I truly believe that everything happens for a reason and will be used for good!  And that’s what we’ve seen!

 

2 Responses to Our Emma’s story

  1. Welcome, Shannon! Emma is doing so well. I checked out her cute pictures on Facebook. Adorable. I am glad that you wrote your story here. In some ways it is similar to ours and others very different. I love learning about all of our families and what we have experienced. Blessings to you! Hope to read more from you.

  2. KevinO says:

    Shannon, sorry for the delay in commenting. I’ve been meaning to respond and welcome you to the blog, but haven’t had the time to focus on the whole story!

    Wow, Emma seems to be doing great. It’s amazing the similarities in all of our experiences: intrauterine growth restriction, uninformed Geneticists, G-Tube, Tubes in ears, hates teeth brushing, etc, etc, etc…

    Kendall is 8 months younger than Emma and it is great to hear of her progress. Knowing that Emma is starting to walk gives us hope that Kendall will do the same some time soon.

    I would love to hear what about what you are feeding Emma. We have challenges finding stuff to blend that will get through her button. Please share!

    Welcome. Can’t wait to hear more.

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