Blog

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. 🙂

Advertisements

Life as we know it (The updates)

Over the past couple of months since Luke has been home, our lives have been crazy to say the least.  A lot of changes have taken place, but I think we are finally getting settled into our “new” routine.

Luke had lots of doctors appointments when he came home.  Most of them were follow ups from the NICU.  We’ve been to his pediatrician about every other week for weight checks to make sure he is growing as he should. We also saw ENT, but that’s its own post. 🙂

We followed up with cardiology regarding the ASD that they saw on an echo previously.  Cardiology cleared him for now and told us we don’t need to follow up for two years, unless an issue arises that we would be worried about something cardiac.

Urology and nephrology are going to be an on going thing, but luckily, we don’t have to follow up as often as we thought we were going too.  We won’t see nephrology again until September when they will check his kidney function levels and make sure they are still working great.  We will see urology again when he is close to being one.  We will then repeat the same tests that he has already had (A VCUG and a renal scan).  They will then compare and decide on a plan of action and go from there.

We then have early intervention who sends an occupational therapist out twice a month to work with Luke and help him to hit his milestones.

Because of all the crazy, and the possibility of Luke needing a few surgeries, him randomly getting sick and needing a bunch of testing done due to UTI’s because of his kidneys, we decided it would be best for me to stay home with him.  So, when the school year finished, I said goodbye to my dear friends at Canyon Crest and parted ways with Provo school district. I have since been hired to a transcription job at home, with flexible part time hours.  This will help us reach our goals a little sooner, and still give me the opportunity to be home with Luke and make it to all of his appointments.

The company Alex was working for is closing their Utah campus.  He was laid off from his job on May first.  He then took a job working for Ebay.  While he was looking for jobs, he applied to be a 911 dispatcher with Utah Valley dispatch, and has since been hired to that job.  The dispatch job works out a lot better for our family, so he will be done with Ebay this week, and start that new job this coming Monday.

Life is crazy, but we wouldn’t have it any other way.  Hopefully it will settle down a little bit and we can enjoy a little bit of our summer!

 

The life after

It’s been a while since I’ve posted anything on here, but i’m hoping I will be able to find some time to post more often.  However, while mister is getting in a quick snooze, I wanted to post something that has been on my mind a lot lately.

About a month and half ago, I was asked by a friend how it was being pregnant and having a baby after loosing our twins.  Then, on one of our Sunday trips to the cemetery to see our boys, I made a statement to my husband and I was shocked by his answer.

Lets start at the beginning.

Deciding to try for another baby after we lost our twins was the most terrifying decision we have ever made.  For us, its not “Oh, we decided this, lets give it a few months and hopefully it will happen!”  It’s more of a call to the fertility clinic, go through lab draws, ultrasounds, injections, surgery, a few thousand dollars, an embryo transfer, and a whole heck of a lot of prayers that it all worked.

We lost our twins the last day in January and the first day of February.  In March, a nurse from the fertility clinic called to “Check in and see how the pregnancy was going”. I bluntly told her that we had lost the twins about a month ago and i’m sure made her feel utterly horrible.  We then had an appointment to see our fertility doctor in a few weeks to discuss our options.

After talking with my doctor, discussing it together, saying lots of prayers and MANY trips to the temple, we decided to go ahead with an embryo transfer.  Luckily, we were blessed to become pregnant.

Three days before I was to have my blood drawn to tell us if I was pregnant for sure or not, I took a pregnancy test at home.  As the two lines appeared, the fear, anxiety, worry, and grief washed over.

When I was pregnant with the twins, I did it all that a first time mom does, especially one who is a planner like myself.

I started stocking up on diapers, wipes, clothes, planned out the nursery, started painting the nursery, bought furniture for the nursery, everything you can think of.  When we lost the twins, my mom and niece went to our house while I was still in the hospital and put anything baby related into the nursery and closed the door.  That door stayed closed for a good two months.

With my second pregnancy, EVERYTHING was different.

We didn’t tell hardly anyone but our families for a good little while.  We didn’t announce on social media until we were reassured for the umpteenth time that things were going great. We didn’t take weekly bump pictures.  We didn’t have a gender reveal party. I didn’t buy anything baby related until I was 24 weeks. I listened to his heart beat every night with the doppler that we had purchased. We happened to move while I was pregnant, so a nursery wasn’t put together until right before he was born. A hospital bag was packed when I was discharged the first time for pre-term labor.  EVERYTHING happened differently.

Now, I’m sure I sound utterly crazy to you.  However, I’ve been reassured by my doctor that I am NOT crazy! Ha.

Grief is a funny thing, and every one grieves differently.

The entire time I was pregnant, I was terrified.  Terrified that I was going to give birth and only hold my little peanut for a short time before he returned home.  Terrified that one of the ultrasounds would show that his heart had stopped. Terrified that I was going to have to bury another child.

Basically, what i’m saying, unless you’ve been through a loss like this, you don’t really fully understand.  And if you have been through a loss like this, I’m sure some of this sounds all too familiar.

Luke is now four months old.  We lost the twins over a year ago.  And guess what?  I still grieve them.  I still miss them every day. I still occasionally find my self sad, and sometimes shed some tears for them.  I worry frequently that something is going to happen to Luke.  But, as my doctor has told me, He would be more concerned if I didn’t have these fears.

Going back to what I stated earlier.  When my friend asked me, I told her it was hard, because it was.  It’s the hardest thing we’ve had to do. I told her I still grieve, because I do. I wish that it was a walk in the park, but it isn’t.

Alex’s part of the conversation that day as we were driving through the cemetery is what has stuck with me the most.  He told me that if we hadn’t experienced that, we wouldn’t nearly be the people that we are today.  We wouldn’t have the faith that we have.  We wouldn’t have the understanding of the atonement that we do.  We wouldn’t have met the amazing people that we have, and we wouldn’t have grown to the better people that we are.

So, there you have it.  The truth of what its been like living the life after loss, and moving on.

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.

.

.

.

img_0165

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!

Hidden blessings

Luke has been home from the NICU now for one month.

To be honest, it has been the most difficult and stressful month of my life.

When I went to my follow-up OB appointment, I was talking to my doctor about my anxiety.  Because, I have anxiety.  He told me that if I didn’t have anxiety, he would be worried. He made me feel reassured in my feelings by telling me that with everything I’ve gone through (Infertility, loosing our twins, infertility again, pre-term labor, having a prolapsed cord, having an emergency c-section, having a pre-term baby who is down syndrome, etc.) its okay to be having some anxiety.  We’re working through it, and it’s getting better.

Since Luke has been home, we’ve been to numerous doctor appointments, been re-admitted to the hospital once, had our initial visit with early intervention, figured out a home routine, had lots of snuggles and loves, and have utterly enjoyed our time at HOME as a little family.

One night, while in the bath tub, Luke started throwing up pretty decently.  It took me by surprise, and he increased his respiratory rate higher than normal through out the night.  Eventually, it returned back to baseline, but he continued to throw up.  So, the next morning we took him to the doctor.  While listening to him, Luke’s lungs sounded a little more junky than normal.  We were admitted to the hospital for possible aspiration and vomiting.

IMG_0458

We were admitted on a Friday afternoon and were lucky enough to be discharged late Sunday afternoon.  The chest x-ray they took appeared like Luke may have aspirated, but it wasn’t horrible.  He ended up on high-flow oxygen for about 6 hours, and then was able to go right back to his home oxygen. (1/8 of a liter).

As soon as we got home, we all rested, because Monday we had to make the drive to Primary Children’s and spend the day seeing the kidney doctors up there.

We met with urology first.  We reviewed the nuclear medicine scan that Luke had done two weeks before.  We’ve always been worried about Luke’s left kidney.  This scan showed that it’s functioning at 37%.  This is quite impressive, because everyone (Us and the doctors) were thinking that it wasn’t working at all.  He has hydronephrosis on both kidneys, but it’s worse on the left side.  And he also has urinary reflux on the left side as well. I went to this appointment ready to schedule surgery for hopefully in the summer.  I was shocked when the doctor told us that since his kidney is functioning somewhat, we’re just going to leave it alone and see what happens in a year.  I couldn’t be happier!

We then met with nephrology who was also impressed by his kidneys.  They checked his lab levels and everything came back great.  We will follow-up with them in 4 months, when Luke is 6 months old, just to make sure the kidneys are still functioning well.            (Note: Urology is the group that performs surgery for anything to do with the urology aspect.  Nephrology deals more with the kidneys and how they are functioning.  They typically do not perform any surgeries.)

Today, we followed up with cardiology. Luke has a PFO that the cardiologist informed us is basically the size of a typical newborn.  He says that over time, just like a normal newborn, it will close up on its own.  His last echo looked perfect, his EKG looked perfect today, and his heart sounds great.  He isn’t concerned with anything right now.  We do have to keep in the back of our minds that Luke is at risk of developing pulmonary hypertension.  With his down syndrome, and his tracheomalacia, it puts him at a greater risk. He doesn’t feel like its going to develop anytime soon however.  So, we don’t have to follow-up for 2-3 YEARS! Unless of course, we are worried about something.  BUT, this is a huge blessing! 50% of kids who are born with down syndrome have a congenital heart defect that typically requires surgery.  Somehow we were blessed to not fall into that category and I’m beyond blessed.

At the end of the day, when I’m exhausted from feeding Luke every 3-4 hours, worrying about his oxygen, worrying about his horrible acid reflux, and just worrying about him in general, I can’t help but reflect on how blessed we are to have Luke.  His health conditions could be a lot worse than what they are, but we are lucky.  There are blessings disguised in all of our craziness, we just have to take the time to see them.

IMG_0548

 

 

 

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.

IMG_0578

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!

IMG_0615

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.

img_0154

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:

img_0169

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:

img_0193

(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!