Tag Archives: NICU

A Mid-Week Baby Update

26 Feb

(If You Have no clue what I’m talking about click HERE to read the three former posts about my baby’s, eh…adventure in the NICU.)

Good news!

Right now it’s all good news.

No, we have not been cleared to leave yet.

Yet.

See, while a doctor has not outright said we should be heading home soon, the nurses (for 3 days now) have been prepping me with lists of what we will have to do and mental preps for ‘when you go home’.

Three days in a row nurses have been telling me that my husband and I will be required to learn infant CPR, she will have to pass a 90 minute car-seat test, that we’ll have to watch a video on how to deal with a crying baby and the way, way what not to do’s.

“When you go home…”

It sounds beautiful.

However, once burned, twice shy.

I have gotten my hopes up once. It hurt when they found another little (but that wasn’t how they made it sound) problem and the timetable was wordlessly thrown out the window.

Sunday evening a nurse informed me that they would re-test my daughter’s red blood cell count in about a week. Therefore I figure we should be here at least through this coming weekend, if not another week after that. But what do I know? I’m just a mom trying to establish breastfeeding while watching her daughter slowly detoxing off morphine.

Lots of fun.

It’s not that bad, really. She’s sometimes a little cranky, sucks on her pacifier like there’s no tomorrow when in need of comfort, and, um, has loose stool. Kinda hard to tell the difference, though, all tiny baby poop is supposed to be pretty loose. *shrugs*

Other than the occasional morphine (they’re not going to make a baby go cold turkey! Youch.), Tylenol (only when she really seems to need it), diuretics (probably because morphine can make you retain water), multivitamins and twice a day iron supplements, she is off medications. These are administered orally, since she no longer has any IV’s. The wires coming off her are just monitors (heart rate, breathing pattern, blood oxygen saturation, …and something else). Other than that the only things going into her are the little nasal prongs from her small oxygen tube, and her feeding tube, which goes up her nose and down into her stomach. She hates it and has been trying (and at times succeeding) to pull anything and everything off of and out of her face since day one.

Today’s nurse put word in for the occupational therapists to come visit me and help get her to take the bottle better (they like their measurements when it comes to food intake), and the lactation department is on notice that I want a consultation ASAP.Β  Everyone has been running around like chickens with their heads cut off because they’re at capacity for patients, but they will do their best to get around to me. They don’t want us around any longer than necessary, they need the bed space.

Meanwhile I have been enjoying watching her make faces in her sleep, smack herself in the face with an unguided arm-jerk, and the fascination that widens her eyes when I make a certain popping noise with my lips.

It may not be ideal, and certainly not what I had planned, but I am certainly going to enjoy as much of her early days as I can be a part of. They’re only this little for a small amount of time, and believe me, I am soaking it up. πŸ™‚

Let’s just hope my next post is about our NICU escape plan. lol

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#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. πŸ˜€

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 πŸ™‚ ) 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. lolΒ  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. πŸ™‚

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.Β  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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#MirthMusicMon – Rhett & Link and Baby Updates

9 Feb

It’s another Monday as of 20 minutes ago.

How time flies when you’re feeling disoriented.

I need to make out a to do list. It’s been several days and I still have not transferred our (correct) answers from the ‘practice’ financial aid paperwork to the ‘let’s send this out’ paperwork. Hubby left it in my trust Friday…and now it’s early, early Monday morning and I haven’t even opened the folder.

Bad girl.

But, on to something that will make us laugh and hum.

Here we go!

Today I have found a delicious combo of Rhett & Link videos. If you don’t know who they are you are missing out on some seriously off the wall, geek/nerd music and humor.

Let’s try this one:

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

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Now for some music:

https://www.youtube.com/watch?v=tnzz-eFmKaw

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Yah, only a few of those actually make my skin crawl. Mostly the gum tape, the backwards toilet paper, and the pills taken out of the blister pack out of order. Apparently I’m more of a numbers and patterns girl. Strange, considering math is my archenemy.

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Wow. I just totally nodded off for a moment.

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Baby Update!

(For those of you who have no idea what that means you may want to read this post as well to get the whole story.)

My baby girl is two weeks old now, and in one of the world’s foremost children’s hospitals’ Newborn Intensive Care Unit. This is where she has been since the day after her birth. This is where they diagnosed her with a small, but highly dangerous heart defect. The valve that allows blood to flow to her lungs was much too small, and the muscle of the chamber behind it (that pumped the blood through) was much too over developed in an effort to force blood through such a small opening.

They did the heart procedure a few days ago.

She is doing better this week. This morning when I got into her room she was silently crying away as the nurse changed a poopy diaper. I got her calmed down just as nurse was finishing up. The nurse turned around to deal with the dirty one and baby girl deposited more goo into the brand new one. She almost looked proud of herself. Until the nurse began changing her again, then she got really mad. lol

She was silently crying because of the intubator, which Cardiology requested she be weaned off Monday. So hopefully I will hear my baby squall the next time I witness a diaper change. That would be nice. πŸ™‚

They have taken her off morphine and only administer Atavan (another painkiller) on an as needed basis. So now she is actually looking around, trying to make eye contact. Poor thing keeps smacking herself in the head/face with the arm that is all wrapped up because of an IV. She has a very mild black eye on that side because of the bumping and rubbing. She keeps trying to get this same hand into her mouth.

That’s another thing, she is still giving the cues that she wants to nurse, so hopefully it shouldn’t be too difficult for us to start nursing when the medical staff deem it advisable. Which will hopefully be soon after the tube is out of her windpipe. I don’t know, though.

They are currently feeding her breast milk through a nasal tube, and probably an IV solution of some sort (there are so many tubes and wires it’s hard to tell. I’ll have to try and remember to ask on my next visit). I was told today…Sunday…that they will increase her feeding amount because she is tolerating my milk very well. They were originally worried about over-stressing her body by distracting her blood into spending too much time in her guts. Not sure how that would affect her breathing and heart, but whatever.

I was informed that they are lowering her prostogadin again. That’s…something to do with her heart. I think it’s the stuff keeping open the lung by-pass tube in her heart that is supposed to close after birth. But with her heart recovering nicely and her lungs doing well they are feeling more confident that she could be ready for it to close. Hopefully her body is ready for these changes. Last time they tried some of this her lungs baulked and they had to reintubate her.

The staff was rather impressed by how much of a fight she put up over the process. Of course, it doesn’t seem that they see very many full term babies there. My little stinker looks almost like a giant (6 pounds, 11 ounces at birth) compared to her two roommates.

Hopefully having the tube out of her lungs will make it easier to get her transferred from the bed into my arms. With the pumping schedule I’m on and the amount of food my body is demanding now I only have about an hour with her at a time before I have to go put more milk into bottles and then eat, again. I don’t remember how long it took to get her into my arms shortly before her surgery, but it was a process requiring three people. O.O

And before you think I’m wasting away at her bed side please know that the place where I am staying has cool arrangements with or donations from local zoos, colleges, and philanthropists for free or majorly discounted entry into some pretty amazing places. Saturday I took a few hours with another family and toured the aviary here in town. I got pictures of some royally ugly birds. And a pair each of bald and golden eagles, and some parrots, etc.

Later that evening I attended my first piano concert. He played all three parts of the Moonlight sonata.

Oh, one of the cardiologists told me to expect Little One to be here for another two to four weeks as part of her heart comes back from insane bodybuilder status and gets out of it’s own way.

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Oops, nodded off again.

I think it’s time to wrap this thing up and get some sleep.

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If you would like to see who else is playing along with Mirth and Music Monday this week click HERE.

That is also the link to where you will submit your link if you decide to join in on our merry Monday game. πŸ˜€

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Have a Great week!

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P.S. Please excuse any misspellings of medical stuff, Firefox is no help, and neither is my phone’s spell check.

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

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#MirthMusicMon – Blimey Cow …In 20 Years

2 Feb

It’s Monday again!

Yeah. I’ve made it past my 4th annual 28th birthday and I’m still surprised at their frequency. Go figure.
I have also become a mommy this past month. It’s been scary. Mostly because she was in her third hospital before her twelfth hour of life. But I’ll tack that story after the fun stuff for those who want to know what’s been going on and why I was absent last week. πŸ™‚

For this Mirth and Music Monday I found a funny video by Blimey Cow called Messy Mondays:Seven Things that Won’t Be Cool in 20 Years.

Enjoy!

https://www.youtube.com/watch?v=mkYd2TiOw9c

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Then there’s stuff that I think will always be cool, like Herman’s Hermits. πŸ™‚

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Click HERE to see who else is participating this week.

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That’s it for me folks.

Have a Great week!

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Here’s where I tack on my P.S. for baby drama.
Without going into too many technical or icky details I’ll explain.

Last Sunday afternoon, after spending months in the ideal head down position, my daughter decided to flip right before being pushed out and came out breech, and grey. I got to hold her for maybe a minute before the midwives whisked her across the room and started working on her. All her vitals looked good except she had inhaled maconium and wasn’t breathing, or even trying.
The paramedics arrived (like 30 seconds later) and got her responsive. She was making unhappy squawking noises as they all marched out the door, taking her to the hospital for observation.
The ladies at the birthing center got me cleaned up and one of them drove ahead of my husband and I to the hospital. Then began my experience of being wheeled everywhere for several days (Baby girl did not come out gently, the little stinker).
We had been informed that she was doing alright. When we got to the small intensive care unit, however, we were informed that she was not doing well at all and they couldn’t figure out why. Then, after they worked on her for a couple hours, they discovered that she had holes in both lungs. She was shipped to the next hospital.
This one is the big sister of the first, just one town over. Our little one had two ambulance rides before she was half dry.
At this hospital she got even worse. They still had no idea what was wrong and were trying to assess the damage, find the underlying problem, and keep her alive. (Afterwards I learned that the doctor was at the end of a 48 hour shift and refused to leave our baby because she didn’t want to waste time updating someone else. Same thing with the two nurses who were hovering the entire time she was there. We are currently trying to decide what to make for them to say thank you.)
It was decided that she needed more help than even that large hospital could provide, so they started looking into their three options and prepping her for a flight.
Unfortunately everything, including our airport, was fogged in. It was several hours before any fog lifted, and the first option to open up was Salt Lake City. They jumped on it.
Thankfully before they could ship her the morning staff had come in and we now had a lactation consultant and a social worker helping boss certain things around for us. I was shown how to start collecting milk for when baby is strong enough to be fed (and the consultant slipped some other essentials into those bags of supplies, bless her), and the social worker booked me a flight that left an hour after our daughter (and cash for a taxi from the airport to the new hospital! It also covered my food for the next couple days.).
Lonnie drove me to the airport. There was no time for us to get me more clothes than what I had brought and worn to the birthing center. Thankfully I had been a little wishy-washy, so had a couple shirts and extra under things. Unfortunately, no hairbrush, toothbrush, paste, or anything of that sort. Then I had to leave my purse with him because it would count as a carry-on. I came over with my pumping supplies, a rented pump machine, and a carry-on suitcase with as much stuff jammed in as possible from my purse.
I enjoyed take off and landing, and thankfully caught a nap during the half hour flight. Then we landed and I was completely responsible for myself…and technically handicapped. In fact they had arranged to have a wheelchair and assistant waiting for me in the terminal.

So I was in a third hospital, only this time I had no one around me. Until, a new social worker and a new lactation consultant found me. Both lovely women.
My family was constantly calling or texting me, so I never really felt alone. My husband couldn’t come for a couple of days because of paperwork and logistics. He and my parents arrived on the same day. Huge sigh of relief.

On the afternoon of the first day here our daughter’s doctor sat me down and told me what is wrong with her. She has Pulmonary Valve Stenosis. Basically the valve that lets blood go to her lungs is too small. To compensate it has been working way too hard and has gotten too thick as well.
They have a plan for that. Yup. I have met with her cardiologist now, too. They are going to put a little balloon in her heart and blow it up until it makes that valve bigger…and not in the gentlest way, unfortunately.
However, if the procedure goes well, and she heals correctly, it could be several years before they have to actually go in and do a real heart surgery to make the permanent changes necessary for adult life.
Now, a week after her birth, she only has one tiny hole in her right lung. Her oxygen levels are great. They are taking her off a couple of the medications, and lowering the amount that the respirators are helping because she is breathing rather well. If she continues to heal and stays stable they will be able to perform the ‘cathing’, as they have been referring to it, some time on Tuesday. We are very hopeful.
We still have not been able to hold her; she is hooked up to too many machines and bags right now. But we can go in and touch her and talk to her.
This evening she had the hiccups and was making all the crying faces but couldn’t cry because of the tubes down her throat. That’s the first time I cried at her bedside. I couldn’t pick her up and make it better. But I toughed it out, kept my right hand on the top of her head and my left on her thigh and quietly told her that I don’t like the hiccups either, but when she gets older I’d show her how to get rid of them. A few minutes later they went away and she fell asleep. So now I’ve shushed my baby to sleep. Finally. A week after she was born.

By the way, in case any of you are wondering: She was full term and came out 6 pounds 11 ounces, and 20 inches long.

If this post and explanation seem a little scrambled and rambling, please forgive me. I have been running on adrenaline and too little sleep for a week now.
One thing I must say is that everyone at the second and third hospitals have been wonderful. It has been scary, yes, but not as bad as it could have been if the staff had not been as gentle and caring as they are.

I have to give huge thank yous to my Aunt Debbie for hugs, getting me some dinner that first evening, and your travel pack of tissues.
My parents for always, always being there.
My husband for holding my hand all the time, being man enough to hold my purse, and for bringing the right clothes when you drove down.
The rest of my family for calling and texting and staying upbeat, and understanding if I don’t get back with you five minutes later.

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Okay, that’s all for now, folks. I’ll try to keep you updated, but for the most part I’ll still just be concentrating on Mirth and Music Mondays here. I need the laughs. πŸ™‚
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**Edit: To read the next post with a baby update click HERE.**

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