So we went to Texas Children's today and met with the Specialist that will be working with Westin and his Cleft. Today we brought our ultra sound pictures and she said she could almost guarantee that he has a Cleft Lip, Cleft Palate & Unilateral Cleft meaning it extends to the nose. We have trouble seeing it and in fact we go the high risk dr tomorrow for an additional U/S. (We go to her once a month). I have attached some pictures for everyone so you know what to expect when he is born in terms of looks wise. He will be able to eat normally he will have some special bottles, he will be able to go home if born on time and this is not life threatening. His measurements are all right on schedule which tells us there are no underlying syndromes :) So here is our time line:
One week old: We meet with pediatric orthodontics specialist Dr. B. Westin gets fitted for his appliance that will mimic a palate which will just help him eat better!!
Our pediatric plastic surgeon is Dr. S! Which I have heard in the best!!!
3 months old: Surgery One, he will undergo the 1st of three surgies to repair the nose, palate and lip. We do not think it is going to affect his nose based on the pictures we have seen but just in case!
6 months old: Surgery #2
9months old: Surgery #3
So by that time he will be completely repaired. At 1 yrs old he will start meeting with a speech pathologists to help pronounce hard consonants.
He will have cosmetic surgeries to accommodate his growth of his face at ages 4, 10 & 16. He will get braces at age 10 just to help keep his teeth in the correct spot.
All in all after being a Texas Children's today and seeing all the bald kids and their smiles and good attitudes and this sweet little bald boy wearing a hat and singing and playing the guitar I have realized that what Westin has is not life threatening and though I wish he was not going to have to have surgery I am relieved that of everything that could go wrong this is it and for that I am very very grateful! The pictures they showed me today were beautiful before and after pictures!! So I am very confident his scare will be very small! I am attaching pictures because some of the pictures on the Internet are worst case scenario. He will look different at birth and I want everyone to be prepared to see that. My biggest fear is that people will stare at him and not love on him as much as Tatum so if you could please give them equal attention I would appreciate that!
ON THE PICTURE PLEASE REFER TO THE LEFT SIDE ON THE PICTURE VS. THE RIGHT. THE LEFT SIDE OF BOTH PICTURES IS WHAT THEY ARE THINKING HE HAS! WE KNOW IT IS NOT THE RIGHT SIDE BECAUSE HE HAS THE CUTEST THADDEUS NOSE, THEY ACTUALLY BOTH GOT T'S NOSE, THANK GOD :) Aren't we so lucky we live in Houston and have access to the best drs!!
Ready for things to go perfectly!! I am hoping that we will stop getting stepped on while we are down! I am very very very ready for things to go right!! (Don't get me wrong 2 healthy twins through IVF and Surrogacy is a huge miracle in itself) I am just saying I would love a decade of great news all the time :)
We could use Prayers on the following please:
Continued Growth & Development of the twins
Jenni's health & Strength
For me, this is a lot to take in!
For my family we have had it tough lately!
For my students (mostly the older ones) That they don't think every pregnancy is dangerous, high risk etc. Poor things might say they never want kiddos!!
And prayers that our family stops becoming negative statistics :)
Thanks!
This is the palate! Please refer to the LEFT SIDE not the right
Cleft Lip, Please refer to the left side not the right!
Kristin, no need to worry! I have a feeling that Westin is going to be spoiled rotten and won't be lacking in the "love" department in the slightest :) Both of your sweet babies are a blessing and a miracle, and everyone that knows you guys knows this. Hold on tightly to Jesus when you are feeling the anxiety and know that He is in complete control and loves your little guy way more than you ever could!!!! I can't wait to meet both of your precious babies in just over 10 more weeks!!!!!!! We love you all and are praying for God's hand to continue to be on you, and with you. You've got lots of prayers support so rest in knowing that.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteKristin, you don't know me, but I found your blog by accident and have been reading about your amazing story ever since. I too am pregnant and know the fears of just wanting everything to turn out okay. I just wanted to post this link for you to watch of a family I had the privilege of meeting who's son was born with a cleft lip and palate. I hope it brings a little smile to your face. Alexander has brought so much inspiration and joy to everyone who meets him and my prayer is that your little boy will do the same. May God bless you along this unknown path and lift your spirits as you prepare to become a mom.
ReplyDeletehttp://www.youtube.com/watch?v=dH3wKftEQSo&feature=related
We are praying for you, your family, and those sweet babies!!
ReplyDelete