How to: prepare to meet your baby’s surgeon

I am one of those people who completely forgets everything she wanted to say to a doctor once I get in front of them. Every question or concern I had goes *poof* right out of my head. When my husband and I had the chance to meet with the surgeon who was going to performing Deckards surgery I knew I needed to have a list of questions written down so I wouldn’t forget a thing!

This blog post is for all you mamas out there who are like me and forget everything or you Mamas out there who just want to be extra prepared! I have compiled a list of 20 questions you can ask your surgeon to be extra prepared for the big day.

1. What can I expect the day of delivery?

2. What are visitor policies in the NICU?

3. Are siblings allowed in the NICU?

4. How aggressive will you be with surgery?

– this was an important question for me to ask. My son had a sever case of gastroschisis and our surgeon did everything he could to make sure he had a primary closure! Some doctors play it a little safer and put a silo on before trying to close. You’ll want to know which your doctor is leaning toward so you can be prepared.

5. Will I be able to hold my baby after delivery?

6. How much experience do you have with gastroschisis?

7. How soon after delivery will the surgery be performed?

8. What’s the overnight policy? Can I stay with baby 24/7 or are there certain hours I would have to leave?

9. What is the typical recovery time/How long can I expect my baby to be in the NICU?

10. What are important things to watch for once we are released from the NICU?

11. Can we bring sleepers from home? Things such as dock-a-tots, snuggle me organic bed?

-My son was allowed his Dock a tot while in the NICU

12. What kind of pain medication will my child be on?

13. How long can I expect them to be on pain meds?

14. How long will the surgery take?

15. Can you walk me through the procedure?

16. Will my child need a central line?

17. Is a tour of the NICU available?

– we did this and I HIGHLY recommend it if you can. It made things familiar and not so scary once the day came!

18. Will my baby be put under anesthesia?

19. What are the side effects of anesthesia?

20. What other surgeons could possible perform the surgery?

As always, I thank you for taking the time to read this post and I hope that it has helped prepare you and given you some peace of mind about meeting with your pediatric surgeon! Good luck on this journey with your little warrior.

LO

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50/50

Welcome back to another blog!

It has been a whirlwind last couple of months. We bought a new house, moved AGAIN and celebrated Jaxon’s second birthday! My sweet little man is two!

Speaking of my sweet, oldest boy, I have been asked multiple times what it was like for him and how we handled splitting our time up while his brother was in the NICU. So I’ve decided to write down my top 4 things that made NICU life easier with a sibling at home!

1. Ronald McDonald House

Deckard was staying in a NICU 2 hours from our home. We had the most amazing opportunity to stay at the local Ronald McDonald House closest to his hospital. If you have this chance, I URGE you to take full advantage of it. The Ronald McDonald House was amazing. Most days there are meals provided, a great play area, and for us it was walking distance to the hospital. This allowed us to be as close to Deckard as possible as well as making the strange and scary time easy for Jaxon.

2. Keep your routine (as much as possible)

In between care times, feeding/pumping, I made sure to keep Jaxon’s routine as normal as possible. We structured things around his nap time and would spend every meal together. This gave Jaxon a sense of normalcy even though everything that was happening was far beyond normal.

3. Call on family

I would not have been able to make it through Deckards NICU stay if it wasn’t for our amazing family. My mother, my aunt, and my FIL all came to our rescue. My mom and aunt were my saving grace during this time! They were the ones who took Jaxon out and about pretty much all day everyday. Back and forth to the RMH, out to the zoo*, the aquarium*, for walks (multiple & multiple walks a day). They were angels during a very hard time in my life. Without family, we would not have been able to make it a smooth and easy transition for Jaxon.

4. Visit

As soon as Deckard was stable and didn’t look so scary with all the tubes and wires coming out of him, we took Jaxon to see him right away. We wanted him to know why we had to be apart sometimes and that it was his brother who needed us. Jaxon LOVED getting to see his brother. Even though he was only 16 months at the time, he had a great understanding and enjoyed seeing Deckard. He would stick his fingers through the isolette to let his brother hold them. Once the top of Deckards incubator was open, he would lean down to give him kisses. It was a great beginning to their relationship.

All these things played a great part in making things a little easier for us and for Jaxon. I will tell you that I was terrified of the mom guilt I knew was going to hit whenever I had to be away from Jaxon to be with Deckard. It’s such a strange feeling being guilty for taking care of your child, but I did! I felt so bad for Jaxon that I couldn’t be with him all the time and then I felt even worse when I couldn’t be with Deckard! I tried my best to keep things 50/50 but in our situation, it was hard to achieve.

Having a child in the NICU is a tough situation, but even harder when you have to split your time with siblings at home! In the end, your NICU journey will only be a small moment in time and you will have a lifetime of loving on your little ones under the same roof!

Check back soon for another post! Thanks for reading!

LO

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

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