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Mary, my best wishes continue for a healthy future for little Charlie. Hugs!
Oh gosh Mary...Big hugs going out to everyone in your family especially little Charlie. Love his name...every guy I know named 'Charlie' is a fighter - bet your Charlie is too..!!
Take care and get rest for yourself.
Take care and get rest for yourself.
kfay
Well-known member
Mary, I lived for 45 years with an ASD, which is very close to a PFO. In my case, with my structural heart issues, they said it basically acted as a pop off valve to relieve excess pressure on the right side of my heart by allowing blood to flow from the right to the left. They did not want to close it until I had my other issues fixed because it could have caused me much more trouble.
I hope that he starts progressing well and they can figure out everything that is going on with him. Please keep us posted when you can.
Kim
I hope that he starts progressing well and they can figure out everything that is going on with him. Please keep us posted when you can.
Kim
M
Mary
Thanks everyone for the support and stories you've shared. We are slowly adjusting and feeling much more confident that in time Charlie will overcome any and all obstacles.
The PFO has closed, so now he's left with only the BAV in regards to heart issues. His lungs are clearing, with his respiration rate slowing, and we are thankful for that. However he's not eating well, and he won't leave NICU until he gets the hang of it.
After he leaves NICU and reaches 7 pounds, he will start the regime necessary to fix his feet. One foot is severely twisted while the other is considered moderately impaired. He will have a cast put on both feet, every week, for 8 weeks, then wear a brace 23 hours a day for four months. Then he will wear it at night for three to four years. We understand that the treatment is very successful if there is good compliance. There's no doubt in my mind but there will be 100% compliance!
The PFO has closed, so now he's left with only the BAV in regards to heart issues. His lungs are clearing, with his respiration rate slowing, and we are thankful for that. However he's not eating well, and he won't leave NICU until he gets the hang of it.
After he leaves NICU and reaches 7 pounds, he will start the regime necessary to fix his feet. One foot is severely twisted while the other is considered moderately impaired. He will have a cast put on both feet, every week, for 8 weeks, then wear a brace 23 hours a day for four months. Then he will wear it at night for three to four years. We understand that the treatment is very successful if there is good compliance. There's no doubt in my mind but there will be 100% compliance!
Ross
Well-known member
Like I said, he's a tough little dude. Heck of a start for the little fella, but it really could be much worse.
K
Karlynn
Poor little fella! He's a fighter!
My daughter had to have "casting booties" when she was a baby. Old ladies would look at me and wonder what I'd done to my child.
My daughter had to have "casting booties" when she was a baby. Old ladies would look at me and wonder what I'd done to my child.
Wise
Well-known member
Mary, what wonderful news. We're so glad for Charlie and family. What a relief and a joy!
Charlie sounds like a fighter to me, too, Mary. We're all in his corner, pulling for him and betting he'll win all battles.
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Phyllis
Wonderful news- I'm so happy for all of you and proud of Charlie- he's definitely a chip off his grandma's block!
azpam
Well-known member
Hi Mary! Just catching this post now.Sorry I was slow to respond and we are already on page 4! Praying all is well today. Stress Stress Stress! Try to stay positive and as calm as possible and Charlie will pick up on your calmness and strength. Give your whole family a congratulations on the new arrival with lots of love to flow throughout!!
Marguerite53
Premium Level User
Hi Mary. I'm late coming into this thread, too. Sorry. Please know that I am sending my best hopes and wishes to tiny, brave, little Charlie. Looking forward to continued improvement and positive posts from you.
What a fighter this little boy is. Good luck!
Marguerite
What a fighter this little boy is. Good luck!
Marguerite
noel
Well-known member
Mary, I came here to check for update and was happy to see some later info. What a tough beginning from early pregnancy right into this world but with the good medical help and so many prayers being said for him and him mom and dad and you and Bob , he can't help but overcome every obstacle. We love you all.
Mary:
That's a great update!
That's a great update!
gijanet
Well-known member
Wow! I really have been out of the loope!
Wow! I really have been out of the loope!
I am so sorry to read of the struggle little Charlie has been having, but very grateful to read that both the PDA and PFO have closed. (With some severe cyanotic defects, it is good for the PDA to stay open, but not needed with little Charlie!) I'm sorry to read about the club feet, but it sounds like the prognosis is good. Eating?? Well, geez, we fought that battle for two years, but outgrew it, needless to say, so tell them to keep after it. I'll go send an e-mail of support and will be checking on you guys. Much love. J.
Wow! I really have been out of the loope!
I am so sorry to read of the struggle little Charlie has been having, but very grateful to read that both the PDA and PFO have closed. (With some severe cyanotic defects, it is good for the PDA to stay open, but not needed with little Charlie!) I'm sorry to read about the club feet, but it sounds like the prognosis is good. Eating?? Well, geez, we fought that battle for two years, but outgrew it, needless to say, so tell them to keep after it. I'll go send an e-mail of support and will be checking on you guys. Much love. J.
C
Curtsmum
So glad to hear a little bit of good news. My friends son had a severe club foot when he was a baby, he is 20 now and as done really well with it.
Sending continued best wishes to Charlie and all the family. Hoping to hear more good news soon.
Sending continued best wishes to Charlie and all the family. Hoping to hear more good news soon.
G
Guest
Mary,
Thoughts/prayers continue....
Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker ...RT 66 drive = Sept '09
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Decorations of red on a green Christmas tree" ... Elvis Presley ... 'Blue Christmas'
Thoughts/prayers continue....
Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker ...RT 66 drive = Sept '09
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Decorations of red on a green Christmas tree" ... Elvis Presley ... 'Blue Christmas'
hensylee
Well-known member
Thanks everyone for the support and stories you've shared. We are slowly adjusting and feeling much more confident that in time Charlie will overcome any and all obstacles.
The PFO has closed, so now he's left with only the BAV in regards to heart issues. His lungs are clearing, with his respiration rate slowing, and we are thankful for that. However he's not eating well, and he won't leave NICU until he gets the hang of it.
After he leaves NICU and reaches 7 pounds, he will start the regime necessary to fix his feet. One foot is severely twisted while the other is considered moderately impaired. He will have a cast put on both feet, every week, for 8 weeks, then wear a brace 23 hours a day for four months. Then he will wear it at night for three to four years. We understand that the treatment is very successful if there is good compliance. There's no doubt in my mind but there will be 100% compliance!
Mary, good to know that your precious grandchild is improving. That is very encouraging to you. He will get there, with God's help.
my son, Chuck, had one foot that was clubbed. He wore a cast for six or seven months and then wore special shoes. His foot straightened out finally and he's well now - you met him, so you know he's ok. Charlie will be, too.
