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!

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NICU livin’

I can’t believe that mister is a week and a half old! Where did the time go?!?

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This is our second home. NICU bed 36.

For about a week, we spent time at a children’s hospital about an hour away from home. During all of my prenatal ultrasounds, mister had dilated kidneys on both sides. After he was born, they did a renal ultrasound that showed severe hydronephrosis. Because of the concern for how severe it was, they transferred him from the hospital where he was born to the children’s hospital (Primary Children’s Hospital) so we could meet with urology and nephrology.

From the tests they ran while at primary Children’s, we discovered he has grade 5 urinary reflux in his left kidney. This means that the urine is going back up the ureter into the kidney. They base it on a scale of 1 to 5, 5 being the worst. They said there is a chance he can out grow it, but we will follow up with another test in about 6 months. His left kidney is also a little thin where it should be fat, so we also have to keep an eye on that. Luckily, they’re hoping that the right kidney can compensate if needs be.

Urology and nephrology signed off on him for now. We will follow up with both of them in about 6 weeks just to make sure that he is still doing well.

Once they signed off, we started working with our insurance company to get him back to Utah Valley Hospital where he was born, which is also only about 10 minutes from home. We were lucky and had our prayers answered and he was able to be transferred back down! It beats driving through traffic over an hour each way just to see our baby!

For now, our NICU stay is going well. He’s on just a little bit of oxygen, which is just fine for him. He is a preemie so it just helps him and his lungs out a little bit.

He’s working on figuring out the business of eating. He’s doing really well, and has figured out the sucking business, we’re just working on the swallowing. He has great occupational therapists that have been working with him and teaching us exercises to help him get his suck stronger and work on positioning his tongue.

They give us the discharge timeline of his due date (March 16), but it all depends on how he is doing. Basically once he gets the eating figured out and is able to take a majority of his feedings by mouth, we could go home, even if he’s still on oxygen.

The hard thing we’ve discovered is people sometimes forget that he isn’t supposed to be born yet. He still gets overstimulated and stressed easily. We have been keeping visitors to a minimum so he can not get over stressed and focus on growing and eating. We also have been keeping visitors at bay because it is still respiratory season and the last thing we want to do is get him sick. So, if you’re reading this and have been turned down by us to visit him, don’t take it personal. 😬 It’s for the benefit of our sweet little babe and getting him home!

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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!