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.