This week has been so busy. Actually this whole month has. Where do I begin. For those of you who don't know we are buying our first house which is just so perfect for our family. We love it! And we're closing on Monday. I turned 29 on Sunday. Heath is the sweetest husband ever and did cute little things for me all week. Love that guy. Thank you all for the cards and thoughtful gifts.
Now for the more important sobering news. Many of you know that we had Elliana's Dr. Apt. today for her head. Our pediatrician referred us to a specialist at Children's Hospital in St. Louis to get her a little helmet because her head was a little misshapen supposedly due to delivery or her being breech in the womb.
Much to our surprise she was diagnosed with a condition known as Sagittal Synostosis, meaning the bone plates of her skull had fused together prematurely, sometime in the womb. So she will need to have surgery as soon as possible to remove a fairly large portion of her skull in order for it to grow and fuse properly.
As you can imagine this news came as a bit of a shock. But, we are all coping pretty well right now. The good thing is the cranial and neuro surgeons working with her are amazing and we are 30 min. from one of the best Children's Hospitals in the nation. We have great confidence in their abilities which gives us alot of peace. The Doctors seem very optimistic. Also within the past year and a half they have found a less invasive surgical procedure with very high success rates.
After surgery she will have to wear a helmet 24 hrs a day for the next year. We saw one of them and they make them look so cute. I'm sure she'll look adorable. So today was a very long day for us all. Elliana is the sweetest baby I ever saw. She smiled and cooed all day through all the poking and prodding. Even strapped down during the CAT scan she wasn't scared and never cried. I have to admit it almost broke heart to pieces to see her lying there, my sweet little baby. She has always been so alert and bright eyed. Oh how we love her sweet little spirit.
These next few weeks will be filled with tests and frequent visits to the hospital. Overall we know there are tough months ahead but we are feeling very optimistic. We are so grateful to have such loving and supportive family and friends. Thank you all and we'll keep you up-dated as we find out more.
Here are some pictures taken this week.
Ellie loves bath time
Doesn't she look like a little flower child. Peace, love and all that.
Ellie's big beautiful eyes
At the Park by our new house
13 comments:
Oh my goodness! We will keep you in our thoughts a prayers. Poor little girl!! She is so adorable!
Good Luck with everything. You are a strong lady and excellent mother! I admire that! Precious little girls you have-
What sweet little girls. I am so sorry you guys have to go through this. I am absolutely sure everything will go perfectly. Our thoughts are with you. Please keep us updated and let us know what we can do to help. Give them kisses for us.
Your girls are absolutely adorable. I hope everything goes well, but it sounds like you are in good hands. We will keep your family in our thoughts and prayers. Good Luck!
Heidi, I’m so sorry that this ended up worse than expected! PLEEEEEEASE let me know if there’s anything we can do (watch Sadie perhaps, if you need to go to Dr. appointments?) I gotta tell you, though, your girls are so adorable I can hardly stand it. I LOVE those first two pics of Elliana! We missed you at playgroup Thursday, by the way.
Anyway, call if you need. You know my #….
We will keep you in our prayers. She is really such a beautiful baby. Glad you are in a great place for the surgery to take place. Congrats on the house and Happy Birthday!
With so many prayers and good thoughts this procedure will go as it should. We've talked about this and either one of us will be willing to come out for the surgery if you want us. We love you all and miss you so much. The pictures catch the beautiful sweet spirits of the girls as well as yours. Keep your chin up and know that we love you so very much
LOVE Mom & Tysha
Poor little Ellie. We know that everything will be fine and the surgery will go smoothly. We will keep you in our thoughts and prayers.
Congrats on you house that is so exciting. And happy late b-day once agagin, Heidi. You have such little cuties! Sweet little Ellie, she has the most beautiful eyes. Just from the pictures you can tell how special she is. You guys are so strong and are such great examples. I know everything will go smoothly for your baby girl. If you need anything please let us know. We love you so so much and will keep you in our prayers.
I am so sorry about all your troubles. Ellie will be fine and so will you. I just stared at her today in Sacrament. She is so beautiful. Good luck on the house. Prayers and love to you and your family...
Hey Heidi, We wish you all the luck and hope all goes well. She is so cute anyway. Be strong, you are so great. Jennifer Shirts
Heidi,
My cousins (on my dad's side - not my mom's side because that would be you:)) had the exact same thing as Elliana. There were 4 siblings and three of them had to have the surgery that Elliana will have to have only hers will be 30 years updated. Thank goodness for that and for being so close to the right hospital. What a blessing! My cousins' heads are absolutely fine and normal and I have no doubts that your sweet little girl will be just fine.
Love you!
You have a beautiful family! I hope everything goes well for your little girl.
Martie
mom to 9
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