Saturday, June 15
We stop at some stores to look for a few things we still need for Emma’s nursery on the way to the hospital.
A nurse is feeding Emma when we get to the hospital & the feeding tube is back in… Lynn had told the night nurse not to put it back in until we got there in the morning, but the nurse made her own decision. Emma took 72 ml, 70 ml, & then 45 ml at one of her night feedings, so the nurse put the tube back in. Mike took over feeding her and she took 62 before the rest went in the tube.
Jada & Kennedy stop in for a visit & bring the cutest hat & some lunch.
I try nursing for her 2 o’clock feeding. It’s definitely obvious that Emma knows she can get immediate results from the bottle but not from me. It’s frustrating, but I know this is just the situation we are in & the result of doing both bottle and nursing. She latched for about 5 minutes before turning away. Mike gets her to take 50 more from a bottle but said that it took her a lot of work. The nurse agrees to take the tube back out for a bit.
While she naps we head out to get some fresh air.
She is waking up when we get back, so Mike feeds her while I pump. She takes 60, which sounds good to us…but the nurse says the tube will probably end up going back in.
We say our goodbyes & drive home for the night. Mike puts the stroller and shelves together.
Sunday, June 16
Today is our church’s summer picnic & baptisms! I want to be with my kiddos & teach their lesson, but Sean & Rene say no no no! They force me to simply do nothing to help out. Of course, I snuck off to visit with them quick! But it was so, so nice to listen to Sean preach & worship. The baptisms are afterwards & Tony surprised us all when he gets baptized! A couple of the GLOW girls get baptized too! I get to snuggle with Kahlan for a bit. It’s funny, but I feel like she knows something is “wrong.” This girl has a huge attachment to Mike & a mild one to me. Her giant smile when she sees us was so perfect. She is clingy to both of us this morning & it was totally ok with me. She was filling the ache in my arms because I should have been holding Emma that morning at the picnic..
We stop at home so that I can pump before we drive back to Buffalo.
The nurse tells us that she was only taking about 40 since we left, but Mike gets her to drink 58..
Monday, June 17
E took about 40-50 throughout the night. The physical therapist comes in & tells me that Emma needs to work on her head & neck muscles because they are weak. Also told me that I need to work on getting her to roll to her left side more. She favors the right side, naturally. She was propped on that side for quite a few days right when she was born because of her collapsed lungs. (side note-she still favors the right side, even after 3 months of not being able to roll to a side, she immediately went back to it)
Patient care coordinator comes in after & talks about all of our personal information. She said she visits when we get closer to discharge.
Claudia says the dr’s upped her feeds to 82 ml. Which means she needs to be consistently drinking that amount from the bottle every single time before they will let her come home. Mike calls our pediatrician to get his opinion on all of this. It feels like they are just continuing to add amounts on, as though they don’t want us to leave. We want the tube to come out and for Emma to figure out how to show us she is hungry & actually be hungry… The dr says he will call the hospital and get an update then call Mike back with his opinion.
I nurse her and she does really well on the left side, then takes 60 from her bottle.
As I’m heading out to pump & get lunch, her dr stops me in the hall. Her 3rd dr. And honestly, the only one who has really made any type of effort to speak with us & keep us in the loop.
She tells me that it might be time to consider putting a semi permanent feeding tube in Emma’s stomach. A g-tube. One that we could use, at home, to ensure that she is getting what she needs regardless of how much she takes from the bottle. We could discuss taking the tube out after a year or two, once E figures out how to eat. She also tells me it is a good idea to reconsider the deeper genetic and neurological testing. And that some babies are in the hospital until they reach 44 weeks because of the problems E is dealing with.
I am stunned. It takes all I have to walk away without completely losing it in front of her. I call Mike & he talks me off the ledge. I take my time to have a melt-down and cry and vent to him. Which in hindsight I shouldn’t have. He was miles away at work with no way of dealing with any of this right at the moment. I was just adding stress and anxiety to his day.
My heart is so heavy. I am trying desperately to cling to Jesus… The weight of all these decisions was hard. The anxiety and the unknown basically had me drowning.
I leave the hospital. Those walls felt tight and suffocating.
When I get back, I ask Claudia about the stomach tube. She says that there is absolutely nothing in Emma’s chart that mentions it, so the dr was simply letting me know it was an option. That maybe she was just planting a seed about it..
That does nothing to calm my heart…or head.
Mike gets there & immediately feeds E. He gets her to take 75 ml in 20 minutes. She guzzled it down. I pump & get a ton.
The stress from earlier disappears for awhile as we celebrate how great Emma did drinking!
But really, as the night came to an end & we said goodbye to our girl again. And I said goodbye to my husband again. I felt lost. I wanted to sit Jesus down & ask Him why… Why all of this. Why us. Why my daughter. Just why.
We would feel so close, so excited about progress & going home soon. Then it felt like we would get hit by a semi. Going 100 mph. Completely knocking any hope out of us. I hated it. I hated feeling so unsure about things. I am type-a. I like plans. And I like knowing what to expect.
This.. All of this… was not what I expected. I remember crying a lot this day. And night. I had Hillsong on repeat. I was crying out to God. I just wanted this to be done.
I would see the light, see the hospital in our rear view mirror as we drove away with Emma. Then it would get dark & the hope would be crushed..
to be continued…