I am an emotional person anyways, but add baby hormones, the CVICU and not being able to help your child and I am a hot MESS!!
We left Isabella this morning at the ICU, and even though I know she is in good hands... I still get upset. The whole way home I cried at least 10 times LOL. Ahh...
She is doing better. Her color looks perfect, she is off the bili lights, and eating like a CHAMP! They tell me a lot of times, heart babies don't have much of an appetite-- and I am glad she does :)
After a roller coaster of a week, She is off her IV Fluids, and has a little bit of oxygen still. Her breathing is still sporadic and they are waiting to see when the ductus in the heart closes. After it closes, they will watch her and decide what to do next. IF she can manage the rhythm/blood flow on her own they will not need to put a band around her artery. If NOT, then they will. This is one of the 3 open heart surgeries she may need.
We know she will need the other 2, but just unsure about the 1st.
I can say being the mommy of a heart baby is very scary so far.... and Ive only been thru a fraction of what other heart moms have been thru! I hope to find strength in their stories.
Glad Isabella is doing better! You all are in my prayers and I hope things get easier for ya girl. This is a sad situation for you or anyone to go through. I love you guys and I will continue to pray for all of you.
ReplyDeleteMy name is holly and i work
ReplyDeleteWith Sharon Casey ... She sent me a link to your
Blog.... I too and a heart baby mommy...
He is now 8 years old and has
Gone leeps and bounds over and
Beyond what we could have ever dreamed.
<3
leaving him behind was the hardest for me....
St Joseph is staffed with the finest!!!
Thank you Holly!! What does your son have? Glad to hear he is doing well!!! :) Thank you for posting and please KIT!
ReplyDeleteTetralogy of Fallot
ReplyDeleteHe had no wall between the right and left ventricle
Of his heart ..his
Pulmonary valve was closed .... He had an enlarged heart
He has his first open heart surgery when he was
3 months at st josephs in Tampa and his
Second we had to fly to Columbus Ohio ..
He was number 31 in the country to have
The second
Surgery... We had to feed him with a
Feeding tube because everytime he ate
It would come back up from
The fluid around his heart.. He
Only weighed 9lbs when he was 9 months and had
His second surgery ... His pulseox was
Down to 74.....
He is now chubby playing baseball TKD
And
Full of life... Still have more surgerys
Ahead but have lots of faith! :)
We found that sometimes heart babies have other
Issues you may find later... Mason is also 50%
deaf... I would love to send you pictures
If you would like to email me
Your info..... And please know you can call me anytime
Anyday and I will be here for you!!!!!!!
I can only reply on here =( My email is msanchez1125@hotmail.com I would love pics!
ReplyDeleteWow, your little guy HAS been thru a lot =(
I am happy to hear that he is full of life & energy now though =) that give me hope!!
I have met a few moms who have heart babies w/ TOF... and he has definately done awesome for being 9lbs at 9 mo and now a chubby basebally player!! =) Thats wonderful!
I know medicine has came a long way in 8 years, but it sounds like you had a scary start, but a lot of exciting blessings afterwards. Thanks for sharing your story w/ me. And tell Sharon thanks for putting you in touch.
Please email me and KIT!! I appreciate your kindness! This is def. scary... but I am learning heart babies are so strong and so special!!