Warning: This might be a long post...there has been so much to tell...I know many of you have been walking on "pins and needles" with me...while we have been waiting, and watching and hoping for good outcomes for Charly.
Looking at this picture of my little Charly Bella...you really would never know or imagine all that she has been through. Besides the obvious nasal cannula I am ALWAYS getting compliments from people about how "normal" Charly looks. "She looks like a normal baby". I LOVE IT.
But...given the fact that she has DONE SO WELL, and is a MIRACLE BABY...she still has her set of challenges, and I am trying so hard to be accepting and understanding of what she needs, and how we can take care of her...to allow her to do EVERYTHING POSSIBLE to live a normal life, and to be a NORMAL BABY. This past week has been very challenging...to say the least.
The past few weeks have been pretty rough for little Charly. She's endured test and after test, and although I'm glad she wasn't admitted into the hospital...all of the going back and forth...tests...differences of medical opinions, etc, etc...has been sheer exhausting! On Monday Charly had a CAT Scan.
The CAT Scan was needed to check and see what is going on in little Charly's brain. Due to her brain bleeds she's at high risk for many, many complications, including: seizures, cerebral palsy, motor-skill deficiencies, mental retardation, hydrocephalus (that may or may not require a shunt), cyst growth, etc. So far, Charly has "miraculously" escaped many of the complications due to her brain bleeds. I am so thankful for that. Now that Charly is having drops in her heart-rate...we have been on pins and needles to figure out what is going on with her. The CAT scan was just one test ordered to show us how her brain is looking.
She endured the CAT scan really well, and held still just long enough for them to capture what they needed.
Thank heavens for the toys (She liked the tiger flashlight the most) that kept her focused on a little bit of fun.
She also liked the "sky ceiling" but it didn't capture her attention for too long. The CAT scan was on Monday, and we didn't have a lot of information until today...so I have a lot of anxiety that built up just waiting, and waiting. It's so convenient when Charly's Neurosurgeon decides to go on vacation...because we had to make about 15 phone calls to get any kind of answer as to what happened on her test results...and we still don't have a complete clear picture. I'm sure we'll have an appointment sometime next week to meet in person with the Neurosurgeon. But, this is what we do know:
*Charly's not experiencing anything that needs URGENT medical attention today.
*She DOES have increased ventricle size, and that is concerning...but we don't exactly know what that means.
*One of the Neurologists that saw Charly kept saying the word "REMARKABLE" and "MIRACULOUS" when doing his dictation...and said overall that she is a miracle, and doing quite well!
I suppose one of the things we are learning this week...is that medicine is still a science, and there are SO MANY differing opinions.
Charly also had a visit with the Cardiologist. When she was born she had a PDA. Luckily, her PDA closed on it's own, and she didn't need any surgical intervention for her heart. She also had a PFO. We were told that she would most likely need heart surgery when she is a little older to close the PFO. The Cardiologist performed several tests:
An EKG
An ECHO
And then a Holter Monitor for 24 hours...
Charly was such a CHAMP through all of her tests.
She always seems to have a peaceful quietness about her, and it settles my anxieties.
And to top it all off...another Synagis injection this morning. It's been a busy week. We are still waiting for more conclusive information from the Neurosurgeon. We also found out that Charly's PFO is now an ASD...which means she will need to have open heart surgery to correct. The good news, is that right now it is not life threatening, and she won't need surgery until she's at least 4 (most likely).
John and I are trying to forget about the "roller-coaster" in the NICU, but we have realized that our "roller-coaster" is going to continue at home in may ways.
We are so grateful for all of the blessings that we have, and know that through all that is happening...our faith is increasing, and we are learning and loving each other. We are also learning valuable lessons about life.
Thank you for all of your thoughts, and prayers!
PS...Our pediatrician gave us the "go-ahead" to get Charly out of the house in about a month or so...so we have MAJOR SPRING FEVER! I can't wait for all of you to meet our little Charly!
Looking at this picture of my little Charly Bella...you really would never know or imagine all that she has been through. Besides the obvious nasal cannula I am ALWAYS getting compliments from people about how "normal" Charly looks. "She looks like a normal baby". I LOVE IT.
But...given the fact that she has DONE SO WELL, and is a MIRACLE BABY...she still has her set of challenges, and I am trying so hard to be accepting and understanding of what she needs, and how we can take care of her...to allow her to do EVERYTHING POSSIBLE to live a normal life, and to be a NORMAL BABY. This past week has been very challenging...to say the least.
The past few weeks have been pretty rough for little Charly. She's endured test and after test, and although I'm glad she wasn't admitted into the hospital...all of the going back and forth...tests...differences of medical opinions, etc, etc...has been sheer exhausting! On Monday Charly had a CAT Scan.
The CAT Scan was needed to check and see what is going on in little Charly's brain. Due to her brain bleeds she's at high risk for many, many complications, including: seizures, cerebral palsy, motor-skill deficiencies, mental retardation, hydrocephalus (that may or may not require a shunt), cyst growth, etc. So far, Charly has "miraculously" escaped many of the complications due to her brain bleeds. I am so thankful for that. Now that Charly is having drops in her heart-rate...we have been on pins and needles to figure out what is going on with her. The CAT scan was just one test ordered to show us how her brain is looking.
She endured the CAT scan really well, and held still just long enough for them to capture what they needed.
Thank heavens for the toys (She liked the tiger flashlight the most) that kept her focused on a little bit of fun.
She also liked the "sky ceiling" but it didn't capture her attention for too long. The CAT scan was on Monday, and we didn't have a lot of information until today...so I have a lot of anxiety that built up just waiting, and waiting. It's so convenient when Charly's Neurosurgeon decides to go on vacation...because we had to make about 15 phone calls to get any kind of answer as to what happened on her test results...and we still don't have a complete clear picture. I'm sure we'll have an appointment sometime next week to meet in person with the Neurosurgeon. But, this is what we do know:
*Charly's not experiencing anything that needs URGENT medical attention today.
*She DOES have increased ventricle size, and that is concerning...but we don't exactly know what that means.
*One of the Neurologists that saw Charly kept saying the word "REMARKABLE" and "MIRACULOUS" when doing his dictation...and said overall that she is a miracle, and doing quite well!
I suppose one of the things we are learning this week...is that medicine is still a science, and there are SO MANY differing opinions.
Charly also had a visit with the Cardiologist. When she was born she had a PDA. Luckily, her PDA closed on it's own, and she didn't need any surgical intervention for her heart. She also had a PFO. We were told that she would most likely need heart surgery when she is a little older to close the PFO. The Cardiologist performed several tests:
An EKG
An ECHO
And then a Holter Monitor for 24 hours...
Charly was such a CHAMP through all of her tests.
She always seems to have a peaceful quietness about her, and it settles my anxieties.
And to top it all off...another Synagis injection this morning. It's been a busy week. We are still waiting for more conclusive information from the Neurosurgeon. We also found out that Charly's PFO is now an ASD...which means she will need to have open heart surgery to correct. The good news, is that right now it is not life threatening, and she won't need surgery until she's at least 4 (most likely).
John and I are trying to forget about the "roller-coaster" in the NICU, but we have realized that our "roller-coaster" is going to continue at home in may ways.
We are so grateful for all of the blessings that we have, and know that through all that is happening...our faith is increasing, and we are learning and loving each other. We are also learning valuable lessons about life.
Thank you for all of your thoughts, and prayers!
PS...Our pediatrician gave us the "go-ahead" to get Charly out of the house in about a month or so...so we have MAJOR SPRING FEVER! I can't wait for all of you to meet our little Charly!
I don't even know what to say. Charly is a miracle....the things she's had to face and how she's overcoming them is amazing! She does look like a 'normal baby' and with awesome faithful parents like you, she will have the best chance in life. You're continuous positive attitude and faith....and Charly's fight have inspired so many. I know the fear of the unknown is real and it's a hard thing to deal with....but just like you said in one of your previous posts.....you will love her no matter what, and so will many many others! :) Remember Elder Rasbands talk in this past General Conference..... "the most special spirits are often housed in the most frail frames" Love you guys!
ReplyDeleteHi Angie, I'm not sure if you remember me since we only talked a couple times in parent hour. I found your blog from Susie's blog, my little guy was in the NICU at the same time your sweet baby was. Your outlook is incredible and Charly is so lucky to have you for a mother. If you would like to talk or view our blog I'd love to hear from you!
ReplyDeleteJessica Kennedy
jkennedy531@gmail.com