Thursday, December 1, 2011

Days 30-34

Day 30: November 27, 2011- Mommy decided to give your space and let you rest for most of the day. Daddy and I came to see you later on when he got off of work. As soon as we stood by your bed you started over-sating. You were so excited that we were there. Then when we were saying our goodnights and goodbyes you started desating. You weren't happy we were leaving. We probably won't have a lot of pictures this week, as you get used to your new gear. Your feeds have been increased to 10 cc. You also left Nurse Siby 3-4 dirty diapers. Nurse Siby has taken care of you since your first night in the NICU, I think you really like her. Unfortunately, she is going to India for a month and tomorrow is her last night with you until the new year. How surprised she will be on how big you have gotten when she comes back! You were also taken off your lipids IV! Big step Little Bird! You are almost off of TPN and completely on breast milk!

Day 31: November 28, 2011- Happy 1 month birthday, Walker! You are at 28% oxygen and are enjoying your 10 cc of feeds. Mommy is still giving you your space while you adjust. It's a little hard too but I know it's what you need. Okay, Little Bird, we need to talk about this desating. This was Nurse Siby's last night before going on her trip and you and your little girlfriend (little baby girl next to Walker), are giving her a run for her money. Nurse Sheri had to suction you today and pulled out a big mess of stuff and tonight so did Nurse Siby. You were really moving around and pulling up on your knees and pulling your booty SO high in the air.

Mommy thinks I will have SO much hair when I get to go home.

Can you see my Alfalfa sprout? It's on top of my head. Just like Daddy's!

I'm up on my knees...

Really up on my knees...

"I don't know where I'm going, but I'm going"

Day 32: November 29, 2011- We hit another road block...again. Walker was reintubated around 12:30 this afternoon. I'm getting so fucking pissed. I know I can't help it and neither can he but I'm pissed with the situation R and I have been given and we just want Walker to be all better. It's not fair all these babies, younger than him, are doing much better. Seeing Walker was hard tonight. My baby is lethargic and not feeling so good. The doctors think he has an infection. Tonight he started back on antibiotics, TPN (lipids and electrolytes), no breast milk for this boy. He also had an IV put in for a blood transfusion and was given morphine for comfort and a medicine to paralyze his body so the vent could work for his tired little body. The medicine that would paralyze him will wear off, don't worry!
Holding Mommy's hand

"I'm sick Mommy"

My poor sick baby.

Day 33: November 30, 2011- No changes in Walker. His culture tested positive for an infection so at least we know the root of the problem.BIG CHANGES for Walker. Around 8 pm the NNP called and said that Walker's oxygen levels weren't that great and we needed to discuss transferring him. Thankfully, R and I had already discussed that when they brought up transfer that we would take him to Texas Children's. We carefully made our decision and actually R said by the first weekend in December if Walker hadn't made progress, that we would be transferring him either way. Another thing to be thankful for is the little birdie that felt compelled to tell us the night before what would happen when we asked for him to be transferred somewhere else. Walker had been on a high level of oxygen all day. His blood gases weren't good, he was put on a small dosage of Dopamine to help him pee which then led him needing Dopamine for his blood pressure, he was getting a blood transfusion and then before the transport team came, they had to put an IV in his head for morphine.

With everything that is stated above and the on call doctor, Dr. Patel, suggesting he be transferred we knew that we were about to start with the doctors. Dr. Bedi called and wanted to talk to R, fucking sexist like the man makes the decisions or something. Anyways, when R was on the phone with him he wouldn't like him get a word in and was saying that the transfer wasn't "medically" needed because all of sudden, Walker was doing a whole lot better. So better that he was on the highest setting on his vent and didn't come down, yeah right. This is what they do, they don't want to lose patients so they tell you everything is fine so you won't transfer them to a hospital where they have no control and are no longer Walker's doctors. Things got heated between Bedi and I when I got on the phone with him and that son-of-a-bitch had the nerve to ask me, "You are willing to risk the life of your child transferring him? He's unstable". First, don't EVER say that to me! EVER! I let him have it after that comment, that made me blow a gasket. Thankfully we weren't face to face because I might of slapped him. Secondly, my child is now unstable when you just said he was stable? Make up your mind. All in all, this Momma won and probably will be selling my soul to pay for Walker's first car ride in an ambulance. Literally.
My lid is open and Nurse Anne is getting me ready to leave!

"There's Nurse Anne! I really liked her. She took really good care of me."

"Daddy talking to me before I left"

"All strapped in and ready to roll!"

"My first ambulance ride!"

"My first time outside"
See those white folders? That is Walker's file, front and back! 

"And we're off!"

Day 34: December 1, 2011- TCH is a whole new world for us. We are the little fish in a new big pond. We don't have regrets making the decision for Walker, this is where he needs to be. Having a micro preemie is hard. You cry all the time, for the good days and for the bad days, for what his future may or may not look like. Watching Walker getting hooked up to all the monitors that we now have to learn what is what, is completely different. After birth he was whisked away and R watched all that. He was already hooked up when I was able to go see him in the NICU. I had a month at a hospital where I was already accustomed to all the machines and doctors and nurses.Walker's stomach was suctioned tonight and he had two syringes full of green bile. Anything green, is not good news. He was also tested for meningitis, where they go through your spine in the back.  My baby needs a damn break. He's working too hard and when he gets to a happy place, something bad happens again. I know he's a preemie, I know this common, but that doesn't comfort me. I can't believe I thought previous weeks were hard. Walker was weighing 3 pounds and 2 ounces yesterday and measuring 15. something inches. The weight gain is fluid weight.

1 comment:

paulak NANA said...

God be with our little Walker.