Today i was talking to the nurse and i had asked "when they take out the RA lone will i be able to hold her?"
she answered :" yes but you have to be VERY CAREFUL" seriously lady .... like i am going to throw her around or something... i am not an idiot . i get it she has to tell me but really its my baby.
i hate that i cant hold her yet. that fucking line has no use they said that they would remove it as soon as she was off all of her drips and that was two days ago. i get that there are other babies but its like sense we moved to the POD that they just leave her there all day and do nothing.
I'm also having issues with sharing. i haven't even got to hold her and have a chance to get to know her a little bit and i have to share her with everyone and i appreciate the advice from people but i hate when people are telling me how i have to take care of her or that i NEED to do something or not do something... i haven't even got a chance to try it out to be a mom yet. i don't want anyone to tell me how to do something i will ask if i need help.
I have a flood of emotions on top of a fucking headache that wont go away. a belly ache that makes me want to rip out my guy every time i eat... and i just want to go home. i want to take my baby home and i want to do the mom thing i want to change a mess of dirty diapers... i want to feel so sleep deprived id give anything for my bed but instead go stand by her bed. i want to be able to properly breast feed my baby.
I hate not being able to cook in my own kitchen and feeling like i am home... i've been drifting around for to long i just want to be settled ... but in the back of my head i know that this wont be for a while... i hate knowing that poor Olivia will have to come back for another surgery.
Olivia is doing great for the most part her swallowing and sucking isn't the greatest but they are going to work on it. today she got to try a bottle it didn't go great but she did try and got 2mls down. they said early tomorrow morning they will be taking the RA line out so we will see how that goes. hopefully they do. 3 chest tubes are still in but hopefully this weekend we get at least one out. they are also talking about moving us to the third floor ... thats like having one foot out the door... i just hope that there are no set backs and that sweet Olivia does get the eating thing down.
Katie,
ReplyDeleteI remember those emotions like they were yesterday. It is so hard to bond with your baby when you have so many other people taking care of them and are unable to hold them and do the "normal" mom duties. I could not hold Jake until he was 9 days old. Even then he had so many lines and a vent. It was another 5 before I held him after that. I can tell you that he is now 9 months old and now he won't let me put him down.
I used to cry every night. It felt so unnatural to leave him. I felt so guilty when I was not with him but when i was with him I felt guilty for not being with my 3 year old. It was the worst feeling.
Jake was in the hospital 8 weeks after his Norwood. For his Glenn he was home 6 days later and we have been home ever since. Hang in there. It gets so much easier. She just needs time to get stronger and before you know it, a year will have passed.
Prayers and Heart Hugs
Kathy Baker
Mom to Jacob- HLHS/Intact Atrial Septum
I just came across your blog on another heart family's blog. I too have a daughter with HLHS and remember all too clearly the feelings you are describing. She is now two and a half and doing wonderfully but it seems like just yesterday that we were in the hospital with her for her Norwood.
ReplyDeleteI have read back through some of your older posts and realized that we went through very similar situations in many respects. My husband is also in the Air Force and we have had a lot of experience dealing with the Exceptional Family Member program.
I know that this is a very difficult time for you guys and I just wanted to offer my support to you guys. Please feel free to email me at Aquabean216@hotmail.com with any questions you may have or if you just want to chat with someone who has been there.
Heart Hugs,
Tina LeMire
Mom to Brielle - HLHS
<3 THinking about you and praying hard honey
ReplyDeleteOhhh...I remember too well your feelings. I had two boys at home and I felt like everyone was trying to tell me what Hope needed and how to do everything. It was quite the test of my patience to not blow up, but I didn't. I can't say that is the case when she went in for her Glenn. I knew her much better than any of the nurses, doctors, etc...and I knew what she needed/wanted and was not nearly as nice to the staff. I was not horrible, but I definitely shared my opinion and took control of the situation when she was there during her Glenn.
ReplyDeleteI will keep you all in my thoughts and prayers.