What they don’t tell you…

Thursday was a fairly good day for Fisher. They came back for more bloodwork since some of the enzyme levels from her liver were higher than normal. They wanted to see if it was consistently higher or just a fluke. Watching your baby be pricked with a needle, multiple times to find a good vein sucks. It’s hard. Definitely not what you want to watch or hear. Luckily Bobby was here to help and love on our sweet girl during it too.

Basically we just hung out, pumped, and bottle fed. We attempted supplementing a little formula with my breast milk and it was not pretty. Fisher gagged and almost threw up and then wouldn’t take a regular bottle for a little while until she knew it was only breast milk. I tasted the supplemented milk and it was nasty. I don’t blame her for it liking it.

So of course me being the mom I am. I started calculating how many ml or oz she needs of just breast milk to get 600 calories in a day. If I could get that amount in her, we could bypass supplementing all together, as long as she gains weight.

She also got to FaceTime her Mawmaw and loved seeing her!

Kisses for mawmaw

We also got a visit from Poppy and she got some good snuggles in.

She did great eating on Thursday, just came up short 30 calories for the day!

Onto Friday.. not the best day. The team made rounds early morning and said they were going to do more bloodwork and another urine sample to send off. At the time I didn’t think to even ask what they’re testing for or why, I was focused on discussing her feeds and intake. We met with the dietitian and she said we could keep on the track we were doing just make sure we get those 600 calories in for the day. They also ordered an ultrasound of her stomach, liver, kidneys and adrenal glands. Lastly, they ordered an MRI of fishers head for Saturday and put in for the outpatient Sweat Test to check for cystic fibrosis.

Gaga loving on Fish while getting an IV

The IV specialist came in to draw blood and I wasn’t sure if I could handle another round of pricking and digging. (Luckily Gaga was there to help) They stuck her once, dug around for minute and said they’d have to try another vein. Next was vein two. She finally got it after a while of trying and started to draw blood. She was t getting enough from it, and when they tried dispensing it into the vials they had, it was clotting. Therefore they needed to try a different vein. This time they decided to have a IV specialist with the ultrasound machine come in to find a deeper, larger vein. He used some numbing spray (why haven’t they used this before!) and he finally got a vein. What took over an hour to get a vein and draw blood was probably the hardest thing I’ve gone through.. yes me.. they don’t tell you in birthing class or books or hell even your friends that one of the hardest thing is watching your child in pain and not being able to help. Hearing her scream and cry louder than ever before and a new cry you’ve never heard before makes you sick. I thought I was going to throw up at one point I was in so much pain for her.

So I’m telling all you mommas and soon to be moms, this shit is hard. People will tell you lack of sleep and colic babies are rough.. that’s true.. I’ve endured both.. but I’m warning you now that feeling knowing you can’t do anything to help your child when they are hurting, is harder than anything.

The rest of the day went fairly well. We had her ultrasound done in our room, and had lots of snuggles and play time. We even had visitors in the evening!

Big brother, Wells, and sweet cousin, Emerson (can’t forget baby Everlee)

Saturday’s update coming soon.. please continue to pray for our sweet girl and for answers.

CLICK HERE To Donate To Fisher’s Medical Fund

2 thoughts on “What they don’t tell you…

  1. Oh how I wish I could hold her and help you ! I pray for this sweet girl! Love you all and pray for all of you! Aunt Camille!!

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