.."so that your faith would not rest on the wisdom of men, but on the power of God."
Yesterday we took Henry to the cardiologist for his Echo and EKG, the doctor has been monitoring him close. He slept through the entire Echo which was very important. And did great at everything else. We also had an appointment with his Gastro dr. in the same building an hour later so were in a bit of a hurry to make sure we finished everything in time. Henry's cardiologist came in after his tests were finished and said, "so we will see him back in 6 weeks". I said, "Is it better?" He said yes. Three weeks ago his pressure gradient was at 63 which would mean surgery and yesterday it was at 39, which is AWESOME! My God is an Awesome God. I asked the doctor if this was normal for it to go down like that as he has grown and gotten older. He said no actually Henry's heart has done the opposite of what is considered normal. Usually things only get worse. MIRACLE BABY! Thank you, thank you to everyone who has prayed for my miracle baby. He wasn't even supposed to be here because of a bad decision on our part 6 years ago..but here he is our little miracle baby (in more ways than one). I have friends and family all over the world who have prayed for him and yesterday we felt those prayers and know that God has been faithful again. Hebrews 11:1 says,"Now faith is being sure of what we hope for and certain of what we do not see." We have unshakable faith in our God and will continue to. Please continue to keep Henry in your prayers as he is not out of the woods for surgery, but things are definitely looking good for him.
As for his reflux, we have switched formulas again- this time he is on a diary free and corn free one and is doing amazing! The dr. is actually talking about weaning off his PPI slowly and starting solid foods soon because it seems the main problem was his formula. I am hoping from here on out life will be a little bit easier!
Thursday, March 6, 2014
When Henry was 5 days old our wonderful pediatrician sent us to the pediatric cardiologist because he heard a heart murmur (VSD). Once there Henry had an Echo and an EKG.. they told us to treat him like a normal baby and bring him back at 3 months to see if it was closing. When we went back he had another Echo and an EKG, his murmur was still there but they also saw that his aortic valve was bicuspid instead of the normal tricuspid, meaning his valve only has two leaflets allowing blood to flow through instead of the normal three. It is called a Bicuspid Aortic Valve. It is a highly genetic defect and a lot of people are born with it. Most people do not know they have it or show problems from it until their 20's or 30's or even later in life. This is unfortunately not true for Henry. He already is having aortic stenosis. Which means the valve is narrowing and is making his heart have to work really hard to pump the blood through. He is being monitored every 2-3 weeks with Echo's and EKG's. The doctor checks his pressure gradient each time..the highest it has been is 73, about ten days ago it was 63. Normal should be in the 20's..50 or above he needs surgery ASAP..the doctor is hoping to see his gradient go down as he grows, which is why we are still waiting and re-checking. He goes back next week to be re-checked, if nothing has changed or his gradient is higher he will be going in for open heart surgery ASAP to either fix or replace his aortic valve. If it has gone down I have a feeling the doctor will do more waiting and seeing. If he has improvement now and doesn't need surgery right away the doctor said he will need the valve fixed before the age of 8..so surgery is a given. If he has surgery now, he should be good to go until about the age of 20..where he will most likely need another valve replacement. Please keep Henry in your prayers- we are hoping he doesn't need surgery yet, even though the doctor said his risks are the same now as if he was 2 yrs old. He is just so little (still too little at his massive 16 pounds..lol) and the doctors would like him bigger for their benefit. This is all super scary for us, I am in a constant state of anxiety making sure he isn't turning blue or sweating for no reason (both signs that his heart is not doing good). Pray his heart would heal and pray for us. We go back next week to see how things are going. I will try to keep everyone posted on our next steps. His GERD is also still doing very badly. He is on Prevacid, which is the highest PPI medicine he could be on..every day is really hard with him but we are surviving. Thank you for your thoughts and prayers!
|My Henry!! Such a sweet boy!|
Thursday, February 27, 2014
In February we celebrate Hallie's birthday. I really cannot believe this girl is 8! She is becoming such a beautiful young lady. It is so fun to watch her start doing big girl things, like her hair...A LOT! Ha ha. She is also great at doing her sister's hair. She is such a sweet girl with a sensitive heart. She is also super silly and is a major daddy's girl. They love teasing each other and she loves giving him a hard time or trying to get him to give in to her.. which he ALWAYS does. She is a mama's girl too cause she loves to come cuddle with me every chance she gets. She is a great reader and loves her Lego's. She is also very into her American Girl dolls and doing their hair as well. We enjoyed a fun evening on her birthday going out to eat and then going to Grammy and Papa's house for a little party. Enjoy the pictures!
|Drifters for dinner!|
|A rock star party!|
|An alarm clock.|
|And a fancy dress!|
|And a chair for doing her dolls hair!!|
I am so behind on blogging but am trying to slowly but surely catch up. Sadie celebrated her 6th birthday in early January and it was oh so fun. I cannot believe she is 6 already, she is growing up so fast. She is learning to become such a good reader and is SUPER good at math..its almost mind boggling how fast she can add numbers in her head without even thinking about it. She loves playing with her sister and brothers. She loves playing pretend and mom and dad, AKA playing house. Here are a few pictures from her actual birthday and a little party we had for her on the weekend after her birthday.
|Colby photo bombed the family picture!|
|Opening her gifts from mommy and daddy.|
|Reading her cards made by her big brother and sister.|
|She LOVES the Duggars!|
|Pay no attention to the pizza sauce all over her face.|
|Her model pose.|
|Her fake surprise party..ha.|
|New clothes for her Caroline doll.|
|And a beautiful dress for her!|
Tuesday, February 4, 2014
We had a nice Christmas after we all were finally over the flu. All the women of the house contracted it as well as little Henry. We survived and were happy to have it over with before our Christmas fun. We spent Christmas Eve with my parents and brother and most of Christmas day with just our family. We did go back to my parents house for Christmas dinner and a little tea party. Enjoy the pictures.
|finally..she has her own pink DS|
|after they opened all their gifts they had fun opening henry's|
My grandma came out to meet Henry a little before Thanksgiving. She is the only living grandparent between my husband and I. She loves to come visit and see the kids and this was her opportunity to meet Mr. Henry. My wonderful cousin Renee also came out to stay with us before she had to go back to Honduras where she works as a Missionary doctor. We had an early Thanksgiving with them at my parents house as well. (Please keep my grandma in your prayers as a few days ago she fell at her house and broke her hip. She had surgery to fix it and will be starting rehab this week). Enjoy the pictures from her visit.