What to pack in your hospital bag when your baby will be in the NICU! 

I don’t know how many “what’s in my hospital bag” videos I have watched on YouTube. Way too many to count between this pregnancy and when I was pregnant with Jaxon, that’s for sure.

As I started to make a list this time around, I noticed that I couldn’t find anywhere about what you would need if you know your baby is going to be in the NICU. So, I decided to put together a list of things I needed during Deckards NICU stay and I hope this can help some of you future or current NICU momma’s out there!

To start, I packed the basic things I needed, almost as if I was having a normal birth. Toiletries, a couple changes of clothes, things like that. This list is going to be focused a little more on what your baby will need/want during their NICU stay.

• Side snap/button footless onesies – You’ll want these so that wires can easily hang out of the bottom of the onesie and you don’t want anything you’ll have to pull over their head or torso if they’re having to have surgery

• Hats and mittens – If your baby can’t wear clothes for a while, this is nice way to give them a little something so they aren’t completely naked the whole time they’re recovering and the mittens will keep them from scratching their face. We ordered ours from a small shop called LouLou and Co. It was started by a NICU nurse so it has a special place in my heart.

• Swaddle blankets – You’ll want stretchy swaddles in specific. You can’t properly swaddle your little one with all their tubes and wires, so a stretchy swaddle you can’t knot at their feet leaving the wires hanging out is a must. Audrey’s Bear swaddles from Etsy are AMAZING. They have a Swaddle4Swaddle program. For every blanket that is bought another gets donated to NICU babies! How amazing is that?!

• A lovey – I ordered lovey blankets for Deckard from Saranoni. These are THE softest blankets and they are the perfect size for your baby. He’s 5 months old now and still falls asleep with one of them! It’s nice for your baby to have something from home to cuddle with when you can’t be there.

• Mama’s scent – I’m sure you may have heard this already, but a moms scent is obviously extremely comforting to their baby, so a shirt or anything that smells like you is essential.

• A pacifier – If you’re a mom who plans on using one I would have one packed. We used the natursutten brand with both of our boys. It’s made with breastfed babies in mind. So if you’re planning on breastfeeding after your NICU stay, these are the ones to choose!

As for the basic stuff like diapers, wipes, and pump parts, the NICU should provide all of those things for you. I will have everything I listed linked below for you guys if you want to see what we got or if you would like to support any of the small shops or the Swaddle4Swaddle program!

I hope this list helped some of you NICU mommas out there and makes the upcoming journey a little bit easier for you. Feel free to share this list if you found it helpful!

LO

Items mentioned:

Pacifiers: https://www.amazon.com/dp/B001AVMF10/ref=cm_sw_r_sms_c_api_EvPBAbM0CWWW3

Lovey blanket: https://saranoni.com/collections/bamboni/products/taupe-bamboni-home-throw-blanket

Swaddles: http://etsy.me/2har3Ku

Side snap onesies: http://www.spearmintlove.com/organic-kimono-bodysuit-maple/

LouLou&Co hats and mittens:https://www.loulouandcompany.com/collections/newborn-essential-bundles

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The Ugly Truth Inside the Neonatal ICU: What to prepare yourself for

Let me just come right out and say it- I’m pretty sure I walked away from the NICU with a mild case of PTSD.

Nothing, and I mean nothing, can prepare you for having a child in the NICU. My first 5 minutes in the NICU at Rocky Mountain Children’s a baby coded down the hall from our son. I was terrified! All of a sudden every nurse and doctors phone on the floor starts ringing and everyone starts running towards the baby’s room.

My husband and I both looked at each other with the same look I our eyes: “I can’t do this”

There’s some kind of alarm going off every 10 seconds it feels like! It also didn’t help that our sons room was at the front of the NICU, where people came in to wash their hands, and to come in and out of the ward was right outside of his door.

It was loud 24/7. The lights are BRIGHT and so harsh. Honestly, everything in the NICU is harsh. The alarms, the lights, the babies crying. It’s all harsh, and loud and extremely overwhelming. So be prepared for the noise.

Be prepared for crying. My husband and I were beyond blessed to be off of work and able to be with our little boy every day. Other babies and parents aren’t so lucky. There was one day, the baby next door to us was crying for HOURS. No nurse could console him and he just cried and cried. I cried! My heart physically ached for him. It brings tears to my eyes just thinking back to that day as a write about it. I wanted to rush in there and hold him and tell him everything was okay! I was immensely grateful to be there for our baby. I held him extra tight that day. You are also going to cry and cry often. More often than you would like to. But it’s going to happen so just have the tissues handy.

There is always someone coming in and out of your baby’s room. Whether it be the nurse, the doctor, the janitor, visitors. Be prepared for ZERO privacy in the NICU. Anyone and everyone is coming in that room, majority of the time unannounced.

Be prepared to feel awkward and scared. It was so strange for me to have to ask permission to do things for my baby. The first few days you aren’t allowed to do anything except what the nurses say (for your baby’s safety of course), and it feels very strange. It’s your baby! Asking for permission to hold him or change his diaper is very awkward. You’re going to be scared the first time you hold your baby. There’s so many wires, IV’s, and monitors, attached to your baby. Every worst scenario runs through your head. Tugging on their wires and hurting them, or knocking a monitor loose and thinking something is terribly wrong. Holding your baby with all those wires is scary.

Be prepared to get annoyed. You’re going to hear “make sure you’re taking care of yourself too.” I can’t tell you how many times someone told me those words. Over and over again, everyday… “make sure you take care of yourself too” YEAH I GOT IT. Frankly, I wasn’t concerned with myself in the slightest, and it is nice knowing others are trying to lookout for you, but like, shut up already.

Be prepared for them to forget about your breast milk. When I would go home at night I would pump throughout the night to keep my supply up. I would bring it in the next morning and set it in the fridge in our room for them to take to the freezer. There were multiple days they forgot and guess what happened to that precious gold I slaved for…. it got thrown away. At this point in time you’re already emotional, but that can send you over the edge.

Be prepared to have a favorite nurse. You never know how quickly you can build a bond with someone until your baby’s life is literally in their hands when you can’t be there. Your baby’s nurse becomes your person. You call them all hours of the day and night when you can’t be there for your little one. They not only take care of your baby, but you too. They answer all your questions, concerns, become your shoulder to cry on, and hopefully an advocate for you and your baby.

Last but not least. Be prepared for your last day. During your NICU stay you feel as though leaving is never going to happen and when it comes it’s almost surreal and it’s scary! Your baby has been monitored 24/7 since the minute he was born and now you’re on your own! No monitors, no doctors, no nurses. It’s all you. All the time. Just you, nobody else! Its the most amazing yet terrifying feeling at the same time. You don’t know the feeling of triumph until you walk out those NICU doors for the last time.

(First time in his car seat and finally leaving the hospital!)

Those of you who are reading this with a NICU journey ahead I hope this gives you an insight others may not tell you. I hope this gives you hope knowing you will have to prepare for the final day and walking out those doors a final time. Know that you are not the only one on this journey.

Thank you so much for reading and check back for more!

LO

Little Brother 

Thanks for coming back to read part 3 of our gastroschisis journey! 

In my last post I wrote about how I was finally able to hold Deckard once he was two days old. You always read about how babies start to thrive when they are able to do skin to skin with mom or dad and I feel without a doubt that kick started Deckard’s healing.

On day three the doctors and nurses noticed how all the IV’s were going bad really quickly so they decided to put in a central line called a PICC line. This meant no more trying to find good veins to poke, and a direct line for all of his medications and IV fluids. I was grateful they were no longer going to poke him everyday to find a new “good” vein but watching the doctors perform the procedure was terrifying. 
When you’re baby is in the NICU everything looks so scary. Putting the PICC line in is considered a sterile procedure. So all the doctors and nurses were done up in all their gear looking like they’re about to head into a surgery! 

In total it took about 20-30 minutes for the PICC line to be placed, and for them to take an x-ray to make sure the line wasn’t too far in. 


A few hours after the PICC line was placed Deckard was still oxygenating really well on his own so they turned off his oxygen. 1 less wire! 1 step closer!

Things pretty much stayed the same for the next two days. 

On day 5 we figured Deckard was doing well enough and didn’t look so scary that it was time for Jaxon to meet his little brother. 

I made a point to talk to Jaxon about Deckard a lot while I was pregnant and why my belly was so big. 

When we brought him into the room I said “Look that’s Deckard” and he immediately recognized what I was saying. As soon as he was close enough he tried giving his little brother kisses through his isolette. My heart could’ve burst! 


We let him touch his hand and the look on his face was priceless. In that moment Deckard wasn’t just our second baby, in that moment he became Jaxon’s little brother. That is a moment I will never forget. 

As the days went on after this we would bring Jaxon to see his brother as much as possible. But with living over an hour away it was a little difficult. 


The following days Deckard improved tremendously and then there was what we thought was a set back. There’s was still some output from his replogle line and he stilled had not pooped. 

I remember crying to my mom on our walk to lunch. What did this mean? Was part of his bowel dead? Was there a blockage preventing him from pooping? Would he need ANOTHER surgery?! All of these questions were rushing through my mind and I was so scared. 

The LAST thing I wanted was another surgery for him. I was almost broken. I honestly don’t know what I would’ve done without my mom by my side. She was so comforting and I knew we would get through anything. We prayed on our walk to lunch and God answered our prayer! 

As I walked back into his room in the NICU our favorite nurse David said “Look! He pooped!” And it was a real baby poop! The gross black tar like stuff babies usually poop at just a few hours old. It may seem gross or insignificant to those who have had healthy babies but him pooping was almost the most amazing moment during his whole NICU stay. It may seem weird but the fact that David saved his first poop diaper to show me meant the world to me! 

The next big milestone would be getting Deckard to take a bottle. I could not have been more anxious for that moment. But it was so close, I could feel it!! 

During our time in the NICU I couldn’t help but feel overwhelmingly blessed. This may seem odd to some of you. Why would I feel blessed with everything my baby is having to go through? I grew up going to church with my mom and had always heard stories of people feeling Gods presence during hard times, but I have never experienced it. Until now. There was a calm I could feel. Which most of the time was my mom comforting me, but I just knew that he was going to be okay. God was telling me everything would be okay… and so far, it was. 


Check back later for part four of our journey and to hear about Deckard’s first time eating and being held by his Daddy! 

Thanks so much for reading. 

LO 

48 hours 

First, let me start off by thanking you for coming back to the blog and following along with our little mans story! 

Now let’s begin with part 2 of our journey. 

It was 48 hours before I was able to hold my precious baby boy. The LONGEST 48 hours of my life. When I gave birth to Jaxon they laid him on my chest and he pretty much stayed there for the first 3 months of his life. Ask anyone, I never put him down. So to have Deckard whisked away from me right after birth and not being able to hold him for 2 days was heart wrenching for me. 

Hour 1: Right after birth the nurses took him away to wrap his instesntines up so they could keep them from coming in contact with something that could cause an infection. The wheeled him to the side of my bed so I could say bye to him and away they went. 

Hour 4: He was airlifted to Rocky Mountains Children Hospital in Denver where he had his first surgery. The amazing Dr. Rothenberg was able to do a complete closure. Praise the Lord! 

Hour 8: When I finally made my way to Denver to see him my poor baby looked lifeless. They still had him on morphine for his pain and a breathing tube in to assist him with breathing. 

*some of these pictures are a little scary and hard to look at Before surgery After full closer 

Hours 10-24: The first day of his life all we could really do was sit by his incubator and just let him know we were there. 

All the wires and iv’s and tubes, it was terrifying seeing my baby like that. 

Hour 36: By the second day the doctors noticed he was doing so well breathing over the ventilator that they decided to remove his breathing tube. This meant one less wire, which, became a thing for us. Every time he would progres the nurses and I would say “One less wire, one step closer.” 

(Roughly) Hour 48: FINALLY able to hold my baby 

I won’t lie, holding him for the first time was pretty scary. He was so tiny and all the wires coming out of him… I was afraid to move, fearing I would tug on something and cause him pain. 

It was scary, but it was wonderful. He was so content being in my arms and that felt amazing. 

The removal of his breathing tube was just the start of his day by day progression. Every day more wires were removed and he was closer and closer to coming home. 

For now, that’s it for the first 48hours of our gastroschisis journey. Feel free to share so that this may reach others going through or about to embark on this same journey! 

LO 

My birth story: Welcoming Deckard, our gastroschisis baby 

I really should’ve taken my own advice when I wrote the post “Expect the unexpected.”

Things are about to get a little TMI so if you have a weak stomach or just don’t like talking about birth…. we’ll maybe this isn’t the blog for you.

It was a Wednesday evening, Jaxon and I had just got home from having dinner with some friends. He was exhausted and fell asleep in my arms on the couch. I remember thinking in that moment that we only had 12 days left just the 2 of us.

Boy was I wrong.

I went to bed that night with what I thought were Braxton hicks contractions. They had started really early on in my pregnancy so I grew to just ignore them.

At 2:50am I was woken up by how strong my contractions had become, but I still didn’t think anything of it. I was only 36 weeks pregnant!

As I was laying awake in bed a felt a gush, you know, down there.. in my head I thought “awesome, I just peed myself” which is a pretty common occurance when I’m pregnant if we’re being honest. I went to the bathroom and when I sat down I noticed blood. I called the on-call nurse at my OBGYN’s office and she told me to go get checked.
At this point I still didn’t think I was in labor. Wrong. Again.

I woke my husband up and told him he had to take my to the hospital.

“What? Why?” was his still half asleep response.

It took us maybe 10 minutes to get ready and get in the car. Thank God my father in-law was here because we had no one we could’ve called at 3am to watch Jaxon!

The hospital is about 30 minutes from our house with traffic, since it was 3am we made it in about 15.

By the time we got to the hospital my contractions were less than a minute apart. It took me probably close to 15 minutes to change into the hospital gown because of how slow I was moving through each contraction.

The nurse came in to check my dilation and she started to giggle

“What?” I said

“You’re 9 1/2 centimeters!”

“WHAT?! No, Avery, I can’t do this” I looked at my husband so scared.

I was about to panic. I wanted an epidural so bad! Thanks be to God they still gave me one, which was very surprising, but hey I’m not complaining.

Once the epidural was in they swung my legs around into the stirrups and I started pushing.

Yep, just that fast.

2 pushes and out came our beautiful baby boy! 4:47am on Thursday August 17th!


I have to admit the sight of him with most of his organs outside of his tiny little body was a little terrifying. My perfect baby didn’t look so perfect, and there was nothing I could do about it…

They whisked him away almost immediately and took him to the NICU waiting for the helicopter transport to come take him to the hospital in Denver where his surgeon was waiting.

Luckily the nurse I had likes to break the rules a little bit, she threw me in a wheelchair as fast as she could so I could go be with our baby. I got to be with him for a few minutes before the transport team showed up. Let me tell you I will cherish those few minutes forever.


Once they took him away it became my goal to get discharged from the hospital as soon as possible so I could go be with him in Denver. Thankfully my doctor was amazing and knew how badly I wanted to be with my baby so I was discharged just a few hours after giving birth.

To say it was a rollercaoster of emotions that day would be an understatement. While I was making my way to Denver, Deckard was going under the knife for the first time; which at the time we didn’t know if it would be his first and last time or the first of many surgeries to come…

Looking back on that day now it’s still a little unbelievable to me how everything went down. I was in shock for most of that day and had no clue what the following days would look like for me or Deckard.

Now this was only the beginning of our journey! I will be posting more soon, all about our NICU stay and so much more, so check back for updates on our gastroschisis miracle baby.

Thanks for reading!

LO

Expect the unexpected: Our gastroschisis journey part 2

Once again, I’ve sat down a few times to write this post and wasn’t really sure how to get it all out. So here goes nothing!

As many women who have had healthy pregnancies I never expected anything to be wrong when I got pregnant again. I was definitely one of those woman who took my healthy pregnancy and easy labor and perfectly healthy baby for granted the first time around.

While we were given the diagnosis of gastroschisis early on at our 12 week ultrasound, we were always told that gastroschisis babies tend to do extremely well during pregnancy and even after delivery. Our baby was a rock star at every appoitment! Even practicing breathing early on, constant movement and great variability in his heartbeat.

Spending 2 days out of the week at doctors appointments became my new normal. Our visits always took less than half an hour, so when I went in for my routine BPP (bio physical profile) for the second time that week I didn’t expect anything different. 

This was the worst mistake I made. 

Never get too comfortable with the way things are going. Ever. 

Everything changed in the blink of an eye. The fetal dopplers showed that our baby had absent blood flow in his umbilical cord, which if goes unnoticed can cause decreased movement and a high risk for a stillbirth. 

I held it together when the doctor told us to pack our bags and head to Denver where I would be delivering but as soon as we walked out of the office I crumbled into a ball of tears. I was only 30 weeks pregnant and our little man had a LOT more growing he needed to do. 

I was numb the entire drive to the hospital, not really knowing what the next hours or days were going to look like. Was I going to have my baby? Was my baby going to be okay? 

I was admitted to the hospital and immediately taken for another ultrasound to check blood flow again. This time they got better results. Thanks be to God. 

I stayed in the hospital for a total of 10 days. Everyday things seemed to get a little better. Some nights, things were crazy. At one point they even though my water broke! But thankfully, here we are at 34 weeks along and the bun is still in the oven! 

There’s still a very rocky road ahead of us. If all goes well baby boy will have until 37 weeks to put on as much weight as possible before they induce me! We know there is a possibly very lengthy NICU stay in our future, but we’ll cross that bridge when we come to it. 

I share all of this in hopes to reach other moms out there who may be looking for advice or a similar story to theirs. I don’t want to scare you when I say to not get too comfortable or to expect the unexpected, but with our babies this is how we have to think now. 

I have faith God chose me and my baby for a reason. We know our little boy is a fighter and God must think all of us who go through this are strong enough to carry them through this journey. So have faith that God truly never gives us more than we can handle. 

Subscribe to the blog for more updates on our gastroschisis baby, what it’s like being induced, and all about our time in the NICU. 

Please keep us in your prayers and wish us luck! 

LO 

Our 1% chance: Our gastroschisis journey part 1 

I’ve sat down many times to write this post and I never know where to start. I’ve decided it’s time for me to get it all out, so without further introduction, let’s just jump right in. 

As many of you may or may not know, we are expecting our second little one. Another boy! That’s right I’m going to be a mom to 2 boys under the age of 2! Yikes! I couldn’t be more excited though! Well, actually I probably could…

 Like any other pregnant woman we had an ultrasound at 13 weeks to check up on our little bundle of joy and going in I never expected it to show anything, but that our baby was perfectly healthy. You’re probably guessing now, that that is not what the ultrasound showed. 

I had an appointment with my OB right after my ultrasound appointment so he could go over it with me. I remember sitting in the chair blissfully unaware that anything was wrong with our little boy. When my doctor came in the room I remember the look on his face and his words “Now we found something, but don’t freak out.” Don’t freak out?! Now i love my doctor but, come on dude… don’t freak out?! Yeah… okay. 

As he sat down he pulled up my ultrasound on his computer to show me exactly what it was they had found. He pulled up the picture of the baby’s tiny little belly and if I looked hard enough I could see what he was talking about. A part of my baby’s intestines were outside of his stomach. 

For those of you that don’t know, because I didn’t until this day. During about 10-12 weeks of pregnancy the baby’s intestines develop outside of their stomach, rotate and then go back inside the abdomen and then the abdominal wall closes keeping everything inside where it should be. In our baby’s case his bowel didn’t make it back in in time before his abdomen closed. My doctor told me they would check again at my 16 week appointment to confirm their findings and to discuss what our baby’s future would look like. 

I went back at 16 weeks and it was confirmed our little man had gastroschisis. Immediately my heart dropped. What did this mean? Was is something I did? Something I could’ve done to prevent it? And that’s when we were told there was only a 1% chance this would happen to our baby. ONE PERCENT. I was a little angry after hearing that. Why? Why did God pick us and our baby to have to go through this? 

Thankfully, as we have been told by multiple doctors, babies with gastroschisis tend to do extremely well. He will have to have surgery no later than 6hours after he is born to put his bowel back into his abdomen. Now this means he won’t be able to eat anything and will be receiving 100% of his nutrients from an IV till about 5-7 days old. He will have a NICU stay of about 2-6 weeks. But he should make a full recovery. 

I honestly didn’t know how to feel about any of it. This was good information right? Our baby would eventually be fine. While I am so grateful that in the end we will have a healthy baby it was hard for me not to be emotional. I won’t get to hold him after he is born, I won’t get to see him until after his surgery and even once that’s over we still wouldn’t be able to hold him for almost a week. A whole week without getting to hold my baby. 

As soon as I found out I was pregnant again I couldn’t help but think it was going to be just like when I was pregnant with Jaxon. Easy. I would give birth and he would never leave my side. 

Wrong. 

So wrong. 

I was now considered high risk and  it was serious enough that my doctor requested my husband stay back from a field training operation in California. That’s when I knew this was some serious shit.  I’m checked twice a week to make sure nothing is preventing our little man from growing normally aside from the gastroschisis. I will be induced at 37 weeks at a hospital in Denver where after he is born one of the best pediatric surgeons around will take him and perform his surgery. Then the real adventure begins! 

I will be writing future posts about delivery, our NICU stay and life after the NICU. Posts that will hopefully reach other moms out there who have a baby diagnosed with gastroschisis and are looking for answers. 

If you’re reading this I ask that you pray for us and our little man during our time in the NICU. This is something neither Avery or I have ever experienced and we know our baby boy will have to fight his first few days and weeks of life. 

In the end we know that this is God’s plan. Our baby will be okay, and our marriage and our family will come out stronger because of it. 

We only have 9 weeks till his arrival! So the countdown is on! 

Check back for updates and more as we navigate a wild 1 and 1/2 year old and a newborn in the NICU 2 hours from home (like I said, pray for us!). 

Thank you so much for reading, and if your a parent reading this because your baby has been diagnosed with gastroschisis know that we’ve been there and it may seem scary now, but everything will be okay! Have faith and know that your baby is a fighter too! 

LO