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.

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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!

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!