Saturday, June 7
When we get to the hospital, a different speech pathologist is feeding Emma. She looks at us and says “I’m using a different nipple than the last lady because of Emma’s diagnosis of turner’s syndrome.” And if looks could kill, she wouldn’t have made it. I ask her what she means “diagnosis”? She looks puzzled & tells me she must have misinformation.
It’s one thing to have a ton of different people always holding and poking and touching your baby. It’s a completely different thing when those people have no idea what is going on with my child. And they offer medical advice without reviewing my daughters chart.
The speech woman apologizes & goes to read Emma’s chart before talking with us. She never comes back. I know the nurse is frustrated that she said that.
It stemmed from the genetics testing that the doctors wanted to do. Apparently they were testing for that, but if this speech doctor would have read the chart, she would have seen the test came back clear.
My dad and sister come up to visit. Auntie Kristin get’s to hold E for awhile & my dad is a little hesitant to hold her. The wires have him scared, which I can’t blame him about. It is very intimidating to maneuver all the wires.
After they leave, I head out to pump. The fellow comes in to talk with Mike while I’m gone. Mike had big plans to get real answers about why Emma is still in the nicu if there’s really nothing wrong with her. He said he had that talk with the fellow but can’t recall much of it when I get back from pumping. One of the nurses fills me in a bit of what he said, but Mike said his brain is just mush after talking to the dr.
We eat lunch in the hospital & chat with another family that has twins in the NICU.
*side note…this family was adopting the twin girls and they were born 3 days after Emma. They were stationed in the same room as E was for most of their stay. Cutest little girls. And the parents were so encouraging to us while we were there. Especially the mom. It was nice to have a Christian woman who was experiencing similar things and could offer advice or sometimes just an ear to listen. We still keep in contact with this precious family!
I nurse E but she doesn’t seem too interested! I go pump & Mike gets her to take 38 ml from the bottle after, so she must not have gotten much from me. Which just adds to my frustration since I accidentally knocked over the bottle with my freshly pumped breast milk…
Katie & Manny are there. They come visit with us and Emma for awhile. My parents are also there. The rules of the nicu state that nobody under (I think) 14 are allowed back unless they are siblings of the patient. SO my sisters have only been able to sit in the waiting room and face time us. But today, thanks to a certain nurse (won’t name names, don’t want her in trouble ) Lexi and our friend Olivia were able to come back. And not only that, they got to hold her!
Nurse E again, before Gianna gets to sneak back and meet Emma too! She has a biggest grin & just rubs E’s head while Mike feeds her!
We head to dinner with my family before they go home.
Sunday, June 8
We get to the hospital in time for Emma’s first feeding, I try nursing but she has no interest. I go pump while Mike tries feeding her. She barely takes 5 ml…Seems extremely tired and out of it today.
We give E a bath in an actual baby tub instead of the pink bucket. Like always, she loves it!
She’s very sleepy today & we think that all of her visitors wore her out yesterday. I mean, all she did was sleep but being held and passed between people probably didn’t make that sleep very restful for her.
I don’t try nursing at her next feeding, just offer her the bottle. She doesn’t take very much from it. Mike takes over and she chugs 20ml. I’m starting to feel like she just doesn’t want anything from me…
Mike needs new work pants so we go to the mall for a bit of fresh air and mindless wandering.
When we get back, I try nursing. She sucks but doesn’t seem or feel like she is getting very much. I’m off to the lonely room to use the awful plastic device & she takes 35 ml from the bottle for Mike. The frustration is getting worse. I feel like she just doesn’t want anything to do with me or nursing. I don’t know what I’m doing wrong & I feel like I should just give up nursing at this point…
We tuck her in for the night and drive home, to Olean. Mike doesn’t talk most of the way home. He is frustrated, that’s obvious but he won’t tell me why & it’s hard not to feel like that frustration was geared towards me. Don’t ask me why I would think that. Just that I did.
Emotions run crazy when you’re thrown into this type of environment and it’s hard to deal with them… Communication is key, but not always easy.
Monday, June 9
It feels nice to wake up in my own bed, after sleeping in. Weird that I can see Emma’s crib from where I sleep, but she isn’t there… Feels like a complete piece of my heart is just void.
I get some laundry and cleaning and errands done. My house is showing signs that I’ve been gone for awhile & Mike is a man, or sleep walker, just rushing out the door everyday…so a good clean was needed.
Tree calls and asks me to lunch. Oh friends, such an encourager she is. Every fear, every doubt, every anxious thought-she shuts them down. She speaks scripture and life to me & makes me feel like I can handle this road.
Head back to Buffalo once Mike is done work. No news on Emma while we were gone. She’s gained some weight & is taking more of her bottle!!
Cuddle and rock her until our arms ache…until it’s time to say goodbye again.
to be continued...