Their Names:
(1) Reed Hutchison White - The Hutchison is after my dad since I didn't want to use his middle name, Wayne! I didn't think that a monogram of rWw would look good, just kidding!
(2) Braden Paul White - His middle name is after Ryan's dad.
Our little Reed is the one with a heart problem. Many people have asked us why that is the name we chose for the one with the condition. We found out 4 weeks earlier that one of the twins was a boy. His name was going to be Reed no matter what the other twin was. Little Reed happens to be the one that has an underdeveloped left side of his heart.
Reed has a congenital heart defect called "Hypoplastic Left Heart Syndrome" or HLHS. It is a pretty complicated condition that will require 3 stages of surgery (age of child) which are:
1)Norwood Operation (less than a week old)
2) Bi-directional Glenn (from 4-6 months old)
3) Fontan (from 18 months - 3 years old)
We are so very thankful that there is a treatment option because just 25 years ago there was no surgery that could help this condition. The long term effects are not known since it has only been around for a limited amount of time. However, there are people living and doing well in their twenties that have had these three surgeries. After the 3 surgeries, Reed will be on heart medicine and see a cardiologist regularly. If you would like to read more about this then here is a link that explains HLHS: http://www.americanheart.org/presenter.jhtml?identifier=1353
Thank you all so very much for the encouraging comments and phone calls during these past couple of weeks. We do not know how people get through things without God, family, friends, and a church family. Ryan and I have such a peace about all of this and it can only be explained by all of the prayers going up on our behalf. This past year has really taught our family that we are not in control and all that we can do is have faith and trust in God that He will use this situation to show how great He truly is!
I promise I will post soon with some pictures and even a 'belly' pic since so many have requested that! Please continue to keep us in your prayers. Some specific prayer requests are that God will perform a miracle and fix Reed's heart and if this is not His will, that the surgeries will be very successful, that I will be able to carry these babies full term, that Reed and Braden will continue to be healthy, and that we will continue to place our trust in God! Ryan and I are so excited about being parents to two precious little boys, and Ryan cannot wait till they can play ball with him!!
14 comments:
Cute names Keeley! Sorry I haven't talked to you lately. I've missed a lot of church this summer with being out of town. All four of you have been in my thoughts and prayers though...especially for complete healing for Reed's little heart. We love y'all!
Stephen and Melissa
Hi! My name is Emily Van Voorhis--my husband lived for awhile with Ryan at Lipscomb (I went to Vanderbilt). I forget who, but a mutual friend from Vanderbilt was telling me about your little boy's heart condition. I'm a pediatric nurse practitioner, so I have a lot of experience with HLHS (i actually did a research project on it in graduate school). In addition, I have a fellow nurse practitioner friend who now has a healthy, I believe, 7-year-old boy who was born with HLHS and completed all 3 surgeries successfully. They live in Huntsville, AL and didn't know they were having a baby with HLHS until he was born! I don't know where you guys are located--but I would love to pass along her information if you would like another parent (and medical professional) to talk to. In addition, I was involved with an organization in Chicago called The Children's Heart Foundation (www.childrensheartfoundation.org). Not only do they work towards funding research for congenital heart defects in children, they provide assistance and support to families. They have a FREE (including shipping) book available to families that is excellent and can be ordered through their site. We use it for all our cardiac patients at UCLA Children's Hospital where I work. Your family is definitely in my prayers--let me know if there is anything I can do. ~Emily (emily.vanvoorhis@gmail.com)
I love the names for your boys! We are keeping you in our prayers.
I love the names! Little boys are so sweet...well at least at 11 weeks ;).
You all will continue to be on my mind and in my prayers.
Sweet names! We will be saying their names often in our prayers!
I know it is very hard to understand why some stuff happens but I believe if God can create the miracle of a baby, He can heal sweet baby Reed either on His own or through surgery. You all are in our constant thoughts and prayers.
Yeah, I can't wait to see your little belly with two big babies inside!!!
i'm glad to be able to pray for all 3 of you with specific names!
What sweet names! We will be praying for your sweet boys everyday!
Keeley, I found your blog thru Stace's this is her mom, the names of your boys are so cute, and you look absolutely wonderful. Troy and I will keep you all in our prayer
Hey Keely, don't know if you remember me or not but found your blog through the Julians'. Letting you know we'll be keeping those little babies in our prayers as well as you and Ryan.
Sara Jo Neal
Keeley & Ryan, my wife Sue and I go to church with Kelly, John and Max Julian. We have a daughter Abigail who just turned 16 on July 6th. She was born 16 years ago with a similar heart condition. She was single ventricle where the right ventricle did not grow. It is basically the opposite of Hypoplastic Left Heart syndrome. She had several other defects - Transposition of the Great Vessels (TGV) where the Aorta and Pulmonary Arteries are on the wrong sides of the heart, Patent Ductuctus Arteriosis (PDA) where the link between the pulmonary artery and aorta has not closed, Atrial Septal Defect (where the wall between the left and right Atrium has not closed). We did not have any idea that our baby had any problems whatsoever going into the hospital for delivery. She came out blue and stayed that way until they gave her oxygen. Because of the TGV she would have died immediately if it had not been for the other heart defects - the Atrial Septal Defect and the Single Ventricle allowed her unoxygenated blood to mix with her oxygenated blood. She lived by the grace of God. We thought our baby just needed some surgeries and she would be 'fine'. Abigail underwent a stroke at 10 days old, which tested our faith beyond belief. We came to understand that we were not in control. That they only thing that we could do for our daughter was to ask others to pray to God for her. She had her 1st heart surgery at 20 days old - banding of the pulmonary artery. When anyone asked what they could do for us or Abigail we told to them to Pray to God for her. She has since had 4 other heart surgeries for a total of 5. She has completed the Fontan operation - she nearly died in the hospital several times and is here only by the Grace of God. In 1997 she had an MRI which showed 40% of her brain had died and turned to brain fluid. The radiologist who did the MRI said she would never associate Abigail's MRI with her because she appears 'normal' to most people. She has had 14-15 years of Physical, Occupational and Speech Therapy. At one point she lost the use of her entire left side of her body - left side hemipeligia due to the stroke. Today she is one grade behind in public school. Again by the Grace of God. I pray for your little Reed that the Lord will heal him in your womb. He has the power to do that if only it is his will. I pray for you and Ryan that the Lord will give you the strength to endure the trials which may come. Above all that he will bless your family as he has blessed ours with our little Abigail. Everyone who meets her knows that she is special - the Lord's hand is upon her - she is a miracle. May his blessing be upon Reed and may he grow up to be a healthy and strong reed. Robert and Sue Gage
What sweet names! You and Ryan are in our thoughts and prayers. You truly have an amazing faith and are such a great example to us.
Cute names!
You may already know this but a good friend of mine (from my church back home in Oklahoma) has a son that has HLHS and will turn 2 in October. Although he's been through a lot that little boy (Gavin) is such a fighter and you'd never know it with his spunk. He's absolutely precious and I'm sure Reed will be the same!
Just thought you might want her blog site address in case you wanted to talk to someone else with the same thing.
Her name is faith:
http://www.gavinparker.blogspot.com/
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