The boy who squeaks

When Luke was just a few days old, he had to go on oxygen.  No one thought anything of it, because he was a 33 week preemie.  It was pretty impressive that he hadn’t already required any oxygen.  So, when his oxygen levels were “swinging”, they put him on a tiny bit to stabilize them.  He also was a little noisy when he would breathe.  The NICU doctors at Primary Children’s informed us that due to him having down syndrome, he most likely had a floppy airway.  And that was all we heard.

About this same time, Luke developed some congestion. They contributed it to being on oxygen and having it dry out his nose.

A few weeks later, we had a random episode while in the NICU where Luke went from being totally fine one minute, to requiring nasal CPAP shortly later. All of this, with no definite explanation, just the possibilities of what it could be.

Fast forward four months to where Luke is still on oxygen, and proves he still needs it every time we do an over night study.

About three weeks ago, we discovered Luke had a cold while getting tested for the reason he had a fever. (He had a UTI at this time, but we did a complete work up to make sure we didn’t miss anything else.) After a week of Luke still being really congested and retracting pretty decent, his pediatrician sent us to see an ear nose and throat doctor.  (He had assumed that we had seen one while Luke was in the NICU at Primary Childrens, but it fell through the cracks).

As soon as the ENT doctor walked in the room, he said “Wow, you make a lot of noise for being such a little guy!” HA! Welcome to Luke.

He did a scope, where he took a camera, went up Luke’s nose and looked in his throat at his voice box.  He then reviewed it with me.

Luke has something called laryngomalacia.  This, explains EVERYTHING. It explains the noisy breathing.  He said it could very well be the reason he’s still on oxygen, because it can cause sleep apnea. It can also cause acid reflux to be worse.  It can cause him to retract all the time.  It can also cause him to go into respiratory distress as well.

So, what is laryngomalacia you ask?  Well, since Alex and I have pretty much taken a crash course to become doctors, I found this video that explains it PERFECTLY! (I was so happy I found it, because Alex was unable to come to this appointment with us, and apparently my explanation of what the doctor told me was not good enough for him.  :D)

https://www.khanacademy.org/science/health-and-medicine/respiratory-system-diseases/laryngeal-conditions/v/laryngomalacia

So, if you’ve met Luke and thought to yourself, “Man! He is a noisy kid!”   This is why! This is why he is squeaky, and sounds terrible! And don’t worry, I think that myself, and so does everyone else! When he is sleeping and super quiet, I tend to worry a little bit more! Haha.

So, what the plan with this?

Well, there are two options.  The typical one is to let them grow.  A good majority of kids tend to outgrow this overtime.  However, Luke can’t be ordinary!  When the doctor did the scope on Luke, he told me he was very surprised that he wasn’t worse than what he was.  Meaning, his throat and the laryngomalacia looked pretty bad.  He switched Luke to what is supposed to be a better acid reflux medication to see if we could get a better control on his reflux.  He said that with the acid reflux, it can cause more irritation to the voice box, making the laryngomalacia worse.

So, we tried the new medication.  And, it didn’t work.  AT ALL.  In fact, I felt like we went ten steps backwards.  I gave it a valiant effort, even his pediatrician said that.  We gave it ten days to kick in and start working.  And, let me just say, my life has been horrible the last week.  His reflux has been SO much worse.  So, we switched back to the medication he was on previously, and please say a prayer that it will kick in soon and I will have my happy baby back.

We follow up with the ENT doctor the end of June to see how the reflux is being managed.  Ha.  Most likely Luke will need a surgery called a supraglottoplasty. But, maybe Luke will surprise me and be totally fine when we see the ENT again.  One can only hope. 🙂

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To the mom

Dear NICU/New/Special needs/after loosing a child mom,

I see you.  I see you with the stress in your eyes.  With the dark circles underneath those eyes as well.  I see you with your hair done in a quick hair style.  I see you in comfy clothes that you threw on.  I see you pump every 3-4 hours.  I see you try to feed your baby just as often. I see you trying to do skin to skin (or kangaroo care) as often as possible. I see you worry about monitors and numbers. I see you worry about every weird sound your baby makes.

I see you.

I am you, I was you.

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Being a NICU mom is hard.  Being a new mom is hard.  Being a mom to a child who is extra special is hard.  Being a mom after loosing a child is hard. I can tell you first hand, that being a mom to any of these is HARD.

You are constantly worrying about something, but mainly its your baby.

Are they okay? Will they be okay? What can you do to help your child?  When will your child be home?  Will I ever sleep again? Will these dark circles/bags under my eyes go away?  Where did this gray hair come from?

I can tell you this from my short experience though.  It gets easier.

The best thing you can do for your baby is to love them.  They will eventually come home, even though it feels like it will never happen and you should just move into the hospital.  You will sleep again… I think anyway.  HA! Makeup works great to cover up the dark circles.  A cool dishcloth helps with the bags.  And as far as the gray hair goes… A little pampering at the hair salon does wonders!

So, to the NICU/New mom/special needs mom/ mom after loosing a child, here is my advice to you.

Take help when it comes. Even the small things.  When you’re sitting up late, doing a feeding, waiting for cares to come around, whenever, make a list of things for people to do.  People will ask you what they can do for help, and when they do, accept it.  Have someone go pick up groceries.  Have someone bring in a meal.  Have someone bring you lunch.  Have someone just talk with you. Make a list so when someone asks, you have something to tell them.

Sleep when you can.  It’s easier said than done, trust me.  Take an hour and just take a little nap.  Move that baby monitor just a little closer and turn up the volume.  They say to sleep when your baby does, do it!

Remember to eat and take care of yourself.  You will get caught up in taking care of your child.  But, you can’t take care of your child if you don’t take care of yourself.  This one is hard for me, but it’s something that I’m working on!

If you happen to be reading this and you’re not one of these mom’s yourself, but know someone who is, here are some ways to help them!

Take them a meal.  Whether it’s a sandwich from a local restaurant or a full-blown dinner.  It means a lot that they don’t have to worry about it. We also had friends bring us a gift card to subway and a 12 pack of each of our favorite soda. This was great, because at one point, our NICU babe was transferred to a hospital an hour away.  So, having the Subway gift card was perfect because we could just grab something and go.

Call them up and talk.  A real conversation with a grown up and non medical person is great.  Talk about normal people things, but make sure you check in on the baby as well.  Just don’t dwell!

Take treat/snack bags.  My aunt did this for us when our babe was in the NICU and it was perfect.  We could just grab something out of the fridge, throw it in the diaper bag, and we had a little snack in-between cares when we needed a little pick me. She put a cute orange, a cheese stick, a bag of jerky, a little bit of chocolate in our bags.  It was perfect, especially for me!

 

The main thing to remember through all of this, is to enjoy. Life is short and precious, and make sure you enjoy every minute of it!

Home sweet home

What a crazy month it has been! SO much has happened!

Our sweet little mister FINALLY came home back on March 15th! I thanked him for coming home before his due date. 🙂 (His due date was the 16th of March!)

Mister had to come home with oxygen, just a tiny little amount (1/8th of a liter per hour) and along with the oxygen came an apnea/bradycardia monitor.

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These are the lovely accessories that get to accompany us anywhere we go

Life has been pretty great since we have been home.  We’ve been advised not to take mister to any public places for at least two months due to the risk of him getting sick.  So, for now, our public outings consist of PLENTY of doctors offices!

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We’re just happy to have our little peanut at home and not have to worry about making it to the hospital in time for a feeding! Here’s to our awesome adventures that await us!

The roller coaster ride

When we started this NICU journey, I wasn’t exactly sure what to expect.

Let me start off by giving a little history about myself.

I have a sister who is seven years older than me who is special needs. She has Spina bifida and has some various complications from that. Growing up, I was in and out of the hospital with her for various appointments, procedures, surgeries, etc.

Growing up, I always wanted to be a nurse. In high school, I took my CNA class and became certified. I worked in a hospital, starting out on a medical oncology floor for one year, then moving to pediatrics where I worked for another eight years. I left my job with the hospital when my maternity leave was over after having our twins.

So, with all of that being said, I’m not new to the medical field. I know terms, equipment, what they do, etc. Am I an expert? Ha. Not even close. I know enough to get me by, and that’s about it.

Being on the opposite side of everything is incredibly hard! I have this problem of getting my hopes up, only to be reminded that I have a preemie baby who is in the NICU.

His kind nurse today explained it all to me as a roller coaster. There are good days and bad days. Hopefully there are more good days than bad, but with a baby in the NICU comes highs and lows.

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This picture was taken Feb. 13 in the afternoon. It’s the first time I’ve ever seen him without tubes on his face. He stole my heart all over again. They took the tubes off to replace them (the NG tube to the other side, and to re position his oxygen canula). He was doing so good.

Then, about six hours later after we had gone home for the night, this happened:

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Mister Lucas likes to “swing” with his oxygen levels. They placed him on high flow oxygen to see if that would help him stabilize with his oxygen levels a little bit more.  After about a day and a half of little to no improvement, he then looked like this:

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(Just a little side note, he’s already getting camera shy and doesn’t cooperate very well with my pictures!)

After trying the higher flow of oxygen and it not really improving, they decided to try something “crazy” as the NP worded it and put him on whats called a trace of oxygen.  It is about 1/16th of a liter of oxygen, just enough to make the oxygen turn on.  Ever since they’ve transitioned him over to this setting, he’s doing fantastic.  He’s no longer “swinging” as much and its great!

The other part of the roller coaster ride is the feedings!  We’re working on breastfeeding and bottle feedings. Mister is supposed to get 43 ml of milk a feeding.  When I breastfeed him, some days he does awesome and will take about 30 ml.  Other days, he takes 3-5 ml.

When we first introduced a bottle, it went horribly! He choked on it three different times and wasn’t sure what to do with it.  The occupational therapist said that when babies breastfeed, they can control the flow easier by clamping down on the nipple.  When they try that with a bottle, milk or formula is still coming out and the baby isn’t sure what to do with it.  That was the first attempt.  The next day, when we tried the second attempt, he was a champ! He took it without any problems, and took 35 ml!

So, were still having ups and downs.  It really is just a roller coaster ride!

Welcome to the world little one.

Monday January 30th started out like any other day.

I had been to L&D the previous night for consistent contractions. My cervix never changed after being monitored, so they sent home home with an increase in my medications.

I woke up Monday and planned my day. Gilmore girls, a nap, a little more Gilmore girls, send Alex to work, another nap, maybe a movie. (Bedrest life is rough, let me tell ya! 😂)   My contractions were pretty steady, so I stayed on top of my pills, taking them every 4 hours.

By noon, I was contracting three hours after taking my pill. This was a little worrisome to me, but I didn’t want to go back to L&D, to be sent home again. So, I got in the shower to see if that would help. It calmed them down a little bit, and I returned to bed. Alex went to work (he just so happened to switch to a swing shift schedule this day) and I did my usual. Around 5:00-5:30 I could barely keep my eyes open, so I took a little nap.

Alex had messaged me and told me he was going on lunch at 7:00. So, I woke up at 7:00 and waited for him to call me. He messaged me again and told me he got stuck on a long phone call and it would be closer to 7:30. So, I decided to get up and get ready for bed. As I sat up on the side of the bed, I had a small gush of water. Alex happened to call about 2 minutes after that, and at first didn’t believe me that my water had really broke! It took some convincing 😬

I headed to hospital and met Alex there. They confirmed that my water had broke, and as luck would have it, my contractions had stopped at this point. I was actually feeling really well! They gave me some antibiotics and told me they were going to try to keep me pregnant until at least 34 weeks.

About an hour after getting to the hospital, the contractions started back up. They were about every 2-3 minutes apart. Since my water had broke, they didn’t want to check my cervix because they didn’t want to risk introducing bacteria.  My nurse just told me to let her know if they changed at all or I felt like I needed to push.  About a half hour later, I had her check me because they were getting stronger and a lot closer.  I was dilated to a 6+.  After she checked me, I had a huge gush of water (my water had slowly been leaking the entire time I was there.) I got up to use the bathroom and change my gown.  As I was walking back to bed, I had a lot of pressure with my contractions, so she checked me again when I got back to bed.  I was then a 7+.

Now, at this point, it was around 10:30.  The nurse went to adjust my monitors on my belly, and was getting concerned when she was only finding a heart rate of 77 for the baby.  She quickly put me on an oxygen mask and a pulse ox to make sure she wasn’t finding my pulse. After confirming it wasn’t my pulse, she then went to check my cervix again, and discovered that little misters cord had prolapsed.  She quickly shoved her hand up into my cervix, climbed on the bed with me while two other nurses  were unhooking me from everything wheeling me out of the room. I was now having an emergency C-section, right then.

They left Alex in the room, and told him that someone would be by to get him in just a few minutes and help him get dressed and bring him the O.R.  I was wheeled in, quickly moved to an O.R. bed, and draped.  My doctor was right there, scrubbed and ready to go.  I was quickly prepped, and the anesthesiologist was in there prepping to intubate me.  The nurses continued trying to find little misters heart beat, and I remember them saying they couldn’t find his heart beat at all.  Because there was no time, I went under general anesthesia for my C-section.

According to when my doctor came by later and told me, and according to my family, from the time I was asleep, they had little mister out in less than a minute.  My doctor also said that before anybody in that O.R. could take a breath, little mister was screaming his head off.

Because I went under general anesthesia, Alex was unable to be in the O.R. with me.  He was however able to be with out little boy shortly after he was born.

Alex informed me the next day that all he could do was pace back and forth in the room sobbing.  He was so scared about both me and the baby.  I remember being completely panicked and feeling so helpless towards our baby. I also remember praying and begging that he would be fine, and that they would find his heart beat. It was one of the worst things we had both gone through so far in life! And, its something that I hope we never have to go through again!

Little mister, AKA, Lucas, is doing quite well.  He was born at 10:41 PM weighing 4 pounds 4 ounces and 17 inches long.  He was born at 33 weeks and 4 days.  He’s currently in the NICU learning how to eat, and dealing with some kidney issues.  I’ll do a better post about our NICU journey so far soon.

I am doing well also.  I’m really sore, but I’m reminded all the time that my C-section wasn’t nice.  They can’t be nice when they get your baby out in less than a minute! However, I am feeling better each and every day!