7:25am
Shift change. A few moments ago, we left Abi alert and confused, yet calm. When we got there to see her this morning she had already been awake. She would complain from time to time with her weak little voice. I feel like there is nothing that I can do to comfort her. We kiss her, talk to her but can't pick her up and cuddle. She is patiently bearing with all the inconvenience and unknown place and people, but it's obvious she's fed up with this place. We can't even be with her during the shift change when the night nurse is giving the report to the new one. They are talking about MY baby! What's the reason for kicking me out when there are no other patients around and hear other patient's reports?
I feel uneasy when I have to leave Abi when she's awake trying to figure out where she's at. It was much easier when she was sleeping, oblivious to the surrounding.
We won't be able to see her until at least 10:30-11:00 am. That's an awfully long time for the baby in the foreign environment not to see her parents.
We tried to offer her a paci but she would just lick it at best. We will keep trying to offer it, so maybe she will eventually start sucking. We need to get rid of that tube as soon as possible..
It's going to be long 4 hours....
j.
Abigail
Monday, December 14, 2009
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About Abi's Blog
HELLO!!
This blog is created not only to keep our family and friends updated on Abi's condition, events, surgeries and everyday life... but also to provide legit and educated information about Congenital Heart Defects that touch 1 in 100 babies.
Welcome to Abi's blog with hopes you will find it useful, interesting, touching and even entertaining...
Here are some facts about our sweet baby girl:
Abi was born on July 24th, 2009 with several heart defects that were detected prenatally at 18 weeks: Congenitally Corrected Transposition of the Great Arteries (Congenitally Corrected Transposition of the Great Vessels) (CCTGA = LTGA = L-TGA), Ebstein's Malformation (Ebstein's Anomaly) (malformed tricuspid valve), Pulmonary Stenosis and VSD.
Her first surgery - PA band - was scheduled for December 8th, 2009, however unexpectedly was changed to an Open Heart Surgery (OHS) called Double Switch performed on December 9th, 2009, originally planned for much later...
This blog is created not only to keep our family and friends updated on Abi's condition, events, surgeries and everyday life... but also to provide legit and educated information about Congenital Heart Defects that touch 1 in 100 babies.
Welcome to Abi's blog with hopes you will find it useful, interesting, touching and even entertaining...
Here are some facts about our sweet baby girl:
Abi was born on July 24th, 2009 with several heart defects that were detected prenatally at 18 weeks: Congenitally Corrected Transposition of the Great Arteries (Congenitally Corrected Transposition of the Great Vessels) (CCTGA = LTGA = L-TGA), Ebstein's Malformation (Ebstein's Anomaly) (malformed tricuspid valve), Pulmonary Stenosis and VSD.
Her first surgery - PA band - was scheduled for December 8th, 2009, however unexpectedly was changed to an Open Heart Surgery (OHS) called Double Switch performed on December 9th, 2009, originally planned for much later...
Second OHS was scheduled for March 3rd, 2010 to correct the baffle created during the 1st surgery.
Thank you for your support and prayers.
Art & Joanna (Asia) & Abi.
Thank you for your support and prayers.
Art & Joanna (Asia) & Abi.
You can CONTACT US at: blog@Care4Abi. com
“You never know how strong you are until being strong is the only choice you have!"
Thank you for your generous heart to help cover for Abi's medical expenses...
Early and Intermediate Outcome After Anatomic Repair of CCTGA
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It's time for the big one. Congenitally Corrected Transposition of the Great Arteries (ccTGA, LTGA). In normal, healthy heart there are...
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Alright, time for another post. For today I picked another of Abigail's heart's complexities, namely Pulmonary Stenosis (PS). There ...
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We found out today about the upcoming surgery in Atlanta.. It's scheduled on December 8th. We're leaving on Sunday, December 6th, ...
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Transposition of the Great Arteries (TGA) In Transpotition of the Great Arteries both, Aorta and Pulmonary Artery are transposed (inverted) ...
CHD Abbreviations:
ASD - Atrial Septal Defect;
DILV - Double Inlet Left Ventricle;
HLHS - Hypoplastic Left Heart Syndrome;
HRV - Hypoplastic Right Ventricle;
LTGA - Levo-Transposition of Great Arteries;
PA - Pulmonary Atresia;
PDA - Patent Ductus Arteriosus;
PS - Pulmonary Stenosis;
TOF - Tetralogy of Fallot
VSD - Ventricular Septal Defect
DILV - Double Inlet Left Ventricle;
HLHS - Hypoplastic Left Heart Syndrome;
HRV - Hypoplastic Right Ventricle;
LTGA - Levo-Transposition of Great Arteries;
PA - Pulmonary Atresia;
PDA - Patent Ductus Arteriosus;
PS - Pulmonary Stenosis;
TOF - Tetralogy of Fallot
VSD - Ventricular Septal Defect
An email was sent to me by a co-worker of a co-worker of yours. I have been praying for Abi since that day and can't take her off my mind. I know that God is peforming great miracles for her and that you will be able to tell the testimony to others about his healing powers. Know that you are not in this thing alone and someone somewhere is praying for you and your family.
ReplyDeleteI am praying for strength for each one of you today.
ReplyDeleteYes, policy DOES suck! That's ludicrous you have to wait that long to see her again. It doesnt take 4 hours for the nurses to update each other on shift change..pppfftt
ReplyDeleteThinking of you this morning...XOXO Abi
-Susie
Here's some good news - once Abi is out of ICU, they DON'T kick you out for shift change anymore!!!! Yeah! That very well may be your last time of dealing w/shift change!
ReplyDeleteJo and Art,
ReplyDeleteI do not like that you are being kicked out for shift change! That is so hard for parents AND baby! It's not like that at our hospital-we're encouraged to be there for shift change and rounds.
I've been keeping up with the blog and I'm so amazed by your little girl. Praying that you see home soon!
Lisa in TN
Eli's mom! (L-TGA)
Baby Center Heart Group member
I do hope she is released from CICU soon. If not, please talk to the head nurse and tell them you would like to be with Abi more. It was against policy, but we were able to stay with our daughter almost all the time during the day as long as we were not making her more agitated and as long as they were not performing some type of procedure on her or another patient. They do make exceptions sometimes so don't be afraid to ask.
ReplyDeleteThat was one of the worst parts of having to visit my baby day after day- i couldn't stay at his beside during the shift - which is when he normally would wake up... It will all be over soon-
ReplyDeleteFE