#MirthMusicMon – Oldies but Goodies and Baby Update

23 Feb

Sorry for forgetting last week’s post. To be honest it didn’t even cross my mind until Monday was almost over, and even then I think my Mom asked me if she’d missed my Mirth and Music Monday post. (Oops!)

But, here I am, sitting in front of a computer…thinking of all the goodies in the huge kitchen to my right. Good thing I’m feeding a kid or I could end up putting on 10 pounds while staying here.

First up: Mirth!

https://www.youtube.com/watch?v=bo_WE0fStds

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Last up: Music!

https://www.youtube.com/watch?v=8_wwP8UZR1o

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Yup, they’re oldies. But they’re goodies. 😀

If you would like to see who else is playing along this week click HERE.

That’s also the link to where you would post Your link if you decide to join our merry little band of bloggers.

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That’s all the Mirth and Music Monday for me this week, folks! Have a good one!

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O.K., now for the baby update.

(Do not, I repeat, do not read this if you just want to revel in your #MirthMusicMon laughter buzz!)

Where do I start? (If you don’t know where this drama started click HERE to go to the previous post about this situation)

About a week ago one of the other babies in her room came down with a cold. He was worse off than her, so I was really worried for him. He’s doing well, though. however, because one of the babies in the room was sick with something highly contagious, both she and he (the third cutie got to go home 🙂 ) had to be put into isolation. I don’t know where he went, but my baby ended up in a little glass room all by herself. She is still there.

Thankfully, she did not come down with a cold, but she did test positive for a variant of a strep virus. Among other tests they ran on her to make sure she was going to live through it they talked me into an LP. A Lumbar Puncture, where they punch a needle in below the base of your spine to get a little spinal fluid. The side effects are apparently small, but here was little ol’ me worrying while in the milk pumping room. After running me through the emotional wringer for a couple days they finally decided it was just a small infection in one of her really deep IV lines. So since they were already administering the antibiotic through that tube, they left it at that.

All those tears just to be told it was basically a non-event.

Yup.

Not cool.

Then progress was made! I asked about her weight and was told that she had gained a smidge over a pound (in 3 weeks!). Mother’s milk is hard to argue with, especially when I’ve put butter on everything that could possibly taste right with it. lol  They were able to up her milk amount to just over 2oz every 4 hours…taking 2 hours to put it from the big syringe through the thin little tube that went down her throat and into her stomach. She hated that tube being in her mouth. More than once she got hold of it and pulled it up. Thankfully it wasn’t moving milk at the time. Inhalation pneumonia from breast milk is not on my list of happy-fun things. :/

They changed out the fun machine that put a million puffs of air a minute into her for one that has a consistent flow to keep her lungs open (it’s called a c-pap machine, often used in adults for sleep apnea, but hers had huge prongs that went up her poor little nose and hurt whenever anything moved them around. She actually got raw spots in her nose, from all these types of machines, that would bleed a bit. Oh, those made her cry. It’s so strange to have this person you’d never seen before hold so much of your heart.)

At this point she was just on 21% oxygen, which is basically the same mixture as room air. I was so happy when I heard that! it was about this time that her voice came back from being intubated for almost two weeks. Boy, you now know it if she doesn’t like something. Thankfully, she is mostly a calm baby and only cries until the need is take care of or the uncomfortable thing is done.

A few days ago they changed out the c-pap for a nose cannula (the little clear tube you usually see on people over 60) and she could suddenly move her head around without the pain in her nose. It’s like holding a completely different baby. Now she turns her head to look at things, or to attempt eye contact with whomever is speaking. She has also started making little cooing sounds when I talk to her. Not often, but she’s getting the idea. 🙂

They took her off her last heart medication, a hormone called prosteglandin which was keeping open a backup tube in her heart which allowed my oxygenated blood to flow through her body without having to all go through not-yet-functioning lungs. Then they turned down the pressure of the air going up her nose.

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Well, yesterday they told me she’s not absorbing oxygen as well as she should. I was informed (just a bit before the last shuttle of the evening) that it could go two ways, either her body is trying to make red blood cells and doesn’t have enough iron, or her body can’t make enough of the cells and they would do an infusion while they figured out why.

Not the thing a mom wants to hear while holding a baby who for all she knew should have been going home a week later. Then the Phlebotomist arrived and I discovered the down side to having a smart baby. She has had her little heel pricked so many times that she starts wailing the moment the lady holds the warming pack to the bottom of her foot. I’m sitting in a rocker with a red, tense, crying newborn, trying not to cry along with her.

After that emotional discovery I laid her back into her bed, calmed her as I could, and left the rest to her kind nurse as I rushed down to the front doors to wait for the shuttle.

They had told me that the test would take about an hour. It doesn’t. The Dr. lady called and told me the good news, Baby just needs extra iron to give her what she needs to make more red blood cells.

I don’t know if the shuttle was running early yesterday evening or if mine was the only name on the list and they lost it, but no shuttle came by 10 minutes past when it should have been there. I didn’t bother to call to find out. I sat down at a table in the foyer and did my best not to fall apart.

I failed.

I know for a fact that if their parents hadn’t called them away several children would have asked why I was crying.

After eating a burger and a package of salted peanuts, and pumping milk, I was in no better state. Every little thought would kick my tears off again. You see, it took a few minutes, but I eventually digested something the doctor had said when she called. They will re-test in a week. A week. Judging by how everything else right now has been going that means a minimum of 2 more weeks in a city I don’t know, in a situation that stretches me past my limits, surrounded by a hundred people who all want to talk…all the time.  I finally gave up the idea of going back to The House for the night and resigned myself to wandering the halls until I found a likely place to curl up for a few hours.

Thankfully, when I peeked in on my baby, she had several people loitering there who negated that idea and made sure I had a place to lay my head when I chose to. So, after holding a sleeping (sedated because she was crying because she was hungry from just 2oz drizzled slowly into her tummy) baby for an hour I handed her back to a nurse who was more than happy to cuddle my beautiful girl (her words), and asked to be led to where the bed was.

Boy did that room bring back memories. It was the room I had when I first got to this hospital. And I slept about as well, too. Ugh.

Well, today I got more good news. Not. Her oxygen needs were up to 70% and supposedly that isn’t all caused by low red blood cells. They decided to follow a hunch and restarted her on the prostoglandin. We knew the moment it took effect because her needs went from 65% to 30% in about 90 seconds.

From what I recall of what the Cardiologist, his resident, and 2 nurses tried to explain to me, this could either mean that her heart just needs a little time to grow…or she will be in for another surgery, which will need to be redone only a few years after that. (Please, God, no.)

That is where I stand as of now. Or rather sit. On the verge of tears every time the world stops spinning long enough to let me string a few thoughts together.

I know she will be fine. She’s a trooper and has a ton of people taking care of her.

Me? I’m not sure that I will survive. This amount of perpetual emotion has been hitherto unknown in my existence and I have no idea how to handle it.

In some ways I am right back where we started, a teary mess on the edge of a breakdown waiting to see what is over the next impossible hill.

Now if you will excuse me, I am going to go to bed and cry until I hyperventilate and fall asleep.

I really wish I was kidding.

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6 Responses to “#MirthMusicMon – Oldies but Goodies and Baby Update”

  1. lucindasutherland February 23, 2015 at 1:36 pm #

    Fun links, thanks. As for the rest, I have been trying for days to figure out why some part of my mind said that I needed to get back down there to you, baby.

    Like

  2. Lois Knigt February 24, 2015 at 11:22 am #

    You are growing in so many way you never thought you would … and never really wanted to. This growth in you will produce a beautiful Rose. It gives me comfort that you speak highly of the medical staff.

    Liked by 1 person

    • rosedandrea February 26, 2015 at 12:12 am #

      Thanks, Lois. I have been facing many of my fears and kicking the stuffing out of them with steel-toed boots. Anything for my baby girl!
      The medical staff has been doing a fantastic job. More than once I have arrived at her room to find a nurse holding her, talking to her, or just standing there holding her binky in as she fell asleep. These nurses are amazing. 🙂

      Like

  3. kristine February 24, 2015 at 8:01 pm #

    It was August of 2001, when my son, Kaleb put us though this same emotional mountainscape (a word I made up which can only describe the hills, valleys and peaks of parents of preemie babies or babies not born 100% healthy). What I do know, is that looking back, God never challenged me with more than I could handle. I trusted my friends, family and strangers more than I ever had to keep me going, to hold me up when I couldn’t do it myself. Now, today, my son is the picture of health. I say this to give you hope, to let you know, you are not alone. We may have never met, but you are on a journey that I have travelled. I will keep you in my prayers dear Rose.

    Liked by 1 person

    • rosedandrea February 26, 2015 at 12:23 am #

      Thank you, Kristine.
      I have made so many new friends, re-connected with old ones, and learned to ask for help and support from those who love me the most. Another mother here today commented that it’s amazing how we all have nothing in common yet get along so well. I replied that we have everything in common. Our hearts and minds are wrapped around little bodies lying in hospital beds. How much more alike can you get?

      Like

Trackbacks/Pingbacks

  1. #MirthMusicMon – Rhett & Link and Baby Updates | Rose's Road - February 26, 2015

    […] **Edit: To view the next post with a baby update click HERE.** […]

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