Our NICU Experience

I promise I have not forgotten about my sweet Mila Joy and the parts that go along with her birth and my mental health story. I have been working on that post and will be sharing it soon, I promise. Lord knows Mila always makes a story more entertaining. But, September is NICU Awareness Month so I felt compelled to share our experience with the Neonatal Intensive Care Unit in both Hays and Wichita when our sweet Baker Ty was born.

On Wednesday, July 10, 2019, Ty, Nora and I loaded up and headed to Hays for Nora’s three year well-check and my 34 week appointment. I can’t remember if Mila got to go with Mema or Aunt E that day. I hadn’t been feeling well (but I don’t normally feel good when I’m pregnant) and I was hoping and praying we’d make it at least 2 more weeks. Nora’s appointment went well, mine did not.

At my appointment, not only was my blood pressure high, I was also having insane headaches and blurred vision. My doctor decided to send up down to L&D to have me monitored. We ended up staying in L&D for a while (thank God my mother-in-law could come pick Nora up) and after 4 hours, my symptoms met the criteria to deliver my little guy, 6 weeks early. My BP was all over the place; my headaches, swelling and blurred vision were not calming down at all.

My doc came in and told me he didn’t want me to have a stroke in the next few weeks with all the complications I was having. I started crying like a crazy peron when I knew how serious he was. I had wanted to make it to 36 weeks because that would help decrease any NICU time we might have to have, but I knew that wasn’t an option anymore. Before my doctor left the room, we discussed that a NICU stay would be necessary to help our little guy start to get going (but in my mind, that just meant a few extra days in Hays).

After that discussion, everything was all kind of a blur to me. The nurse came in and gave me a steroid shot to help with Baker’s lung development. Unfortunately since I had been on a daily aspirin regime for my BP, I was unable to get an epidural. Hays hospital doesn’t do VBACs, so the medical team made the call that I had to be put under completely to deliver Baker. I’ve had c-sections with all three of my babies.

After they wheeled me into the operating room, I was put under and remember nothing (obviously). Ty told me they brought Baker out to the NICU after about 25 minutes and it took me another hour to wake up after that. I ended up in a room at the end of the hallway in the OB wing and I didn’t have normal “nurse care” because my baby wasn’t in the room with me.

I vaguely remember being in the room and wanting to go down to the NICU to see him, so they wheeled my entire bed down the hall and I finally got to meet my baby boy, Baker. He was hooked up to machine; his poor little chest was contracting so hard. It terrified me. Thinking about it now still terrifies me. The worst part about it was that I couldn’t pick him up. I couldn’t nurse him. I couldn’t snuggle his chubby little cheeks or rub his little toes. I couldn’t do anything with him, except stare at him. (NICU babies aren’t supposed to be stimulated too much, because it causes babies to expend too much energy while they’re trying to keep their body temperature up).

Meeting Baker for the first time.

The guilt that I felt in that hospital bed while my baby struggled to breathe was crushing. It was my fault he was in that bed. He should have been able to stay in my belly for another 2-3 weeks where it was safe. It was my fault he had to lay in that bed, hooked up to a ton of machines, because I couldn’t keep him safe. I couldn’t get my BP and swelling under control. He was fighting for air, all because of me. Even though everyone around me reassured me it wasn’t my fault…I couldn’t get that awful feeling off my chest.

The next two days in Hays were incredibly emotional. It is HARD to have your milk supply come in when your baby isn’t actively nursing and he’s laying in a bed across the hospital. Mix those emotions with the fact that the guilt continued to paralyze me made the whole situation worse. Thursday (the day after Baker was born) Ty and I spent a lot of time walking the halls of the L&D unit and visiting Baker. We kept hoping for improvements but he was still requiring a LOT of oxygen. I remember the respiratory therapists and doctors saying that he shouldn’t be requiring that much oxygen.

Then they started to get concerned that he hadn’t eaten anything, because of the way his breathing apparatus stuff was set up. Honestly I don’t remember much, like I said, because I was less than 24 hours out from a major surgery and all I remember was his little body was hooked up to so much crap, it was traumatic for me to see it – and that he wasn’t making the progress they wanted him to make.

Friday rolled around and a new pediatrician was on call. He came into my room at 11am and said that if Baker didn’t make some major headway in the next couple hours, they were going to transfer him to Wichita to the NICU there. Wichita is a much bigger hospital and has a much larger, more advanced unit. I remember hoping and praying he’d turn it around.

A few more hours passed and Baker didn’t improve. He was on 45% oxygen and hadn’t had any nutrients other than sugar water since he was born. Our pediatrician came in and said that Baker was going to be transferred to Wichita. I remember asking if Ty could ride with him, since Baker had to be life-flighted, and the answer was no. We were going to have our 2-day-old baby loaded into a plane and flown to Wichita without either of his parents. Talk about absolute hell.

We got all the necessary paperwork filled out (which took forever); the flight nurses and docs came in and talked to us, and then we walked down the hall to see Baker off. I don’t think Ty or I have ever cried so hard in our lives. His little tiny body was hooked up to so many machines, and he looked so tiny. He was in a contraption that honestly looked like a miniature iron lung. I couldn’t even kiss my baby boy goodbye.

Holy shit, currently in tears as I type this.

I thank God every day for the support system that Ty and I have. My parents were able to take the girls back to their house, while Ty and I went to Wichita. Ty’s mom and dad were in Hays when they transferred Baker. Since I had been released from the Hays hospital and both Ty and I were so exhausted, Ty’s dad Richard volunteered to drive us to Wichita. I was so grateful; the last thing Ty and I wanted to do was drive anywhere.

I’ll never forget that drive from Hays to Wichita. We left around 5:30-6:00 Friday evening. We stopped in Salina for snacks and a bathroom break. Keep in mind I had just had a c-section 2 days before, was super freaking sore, and still very swollen. We got into Wichita around 9:00 that Friday night. Laurie (my mom-in-law) had gone home to get us extra clothes and met us in Wichita. I remember slowly crawling out of the car in the creepy parking garage at Wesley Medical Center, Ty helping me every step of the way. I only had one thing on my mind: getting to my baby.

We walked into the maze that is Wesley Medical Center and finally found the NICU. We gave them our ID’s and got our credentials so we could enter the unit. Walking into the actual NICU is something I will never forget. It felt like hell. The automatic doors opened, the wings of the unit were dark but there were, what seemed like, thousands of monitors and alarms going off. Lights blinking. Monitors and alarms beeping and creating a sound that I won’t soon forget.

It just so happened that Baker had arrived from his first airplane right before we got to the hospital. The nurses, RT’s and nurse practitioner that traveled with him met us by his bed. We saw him all snuggled up, and he actually looked quite comfortable. One of the huge advantages of Baker being in Wichita as opposed to Hays was that Wichita had so many more resources and machines that could help him get better, quicker. I don’t know the technical terms for all the devices, but I do remember that he was put on a ventilator when he got to Wichita and it helped him almost immediately. They were also able to give him an NG tube so he could have nutrients from breast milk, which they weren’t able to do in Hays.

After crying because we knew he made the flight ok, I went into the unit’s pumping room so I could pump. (My milk had finally come in). I remember, again, feeling so guilty about the whole situation. I kept blaming myself and the tears just kept coming. Ty was sitting with me in the pumping room because I think he was as concerned about me as he was about Baker. About the time I finished up pumping, Baker’s medical team came in to talk with us. His doctor came in and she told me that we had a beautiful baby boy. I just remember the tears streaming down my face the entire time they talked with us.

Baker’s doctor grabbed my hand, looked me straight in the eyes, and said, “It’s not if he gets out of here; it’s when.” I can’t even remember our doctor’s name but I can still see her face and I knew she meant every word. It was those 10 words that she said to me that night in the pumping room at the Wesley Medical Center that kept me going for the next 14 days.

We said goodnight to Baker and went to get settled at the hotel for the night. I didn’t get much sleep because I had to get up to pump every three hours, plus I couldn’t get comfortable and just wanted to get back to Bake. One of the best things I LOVED while we were there was the NICView. We could log into our account and see what Baker was up to, anytime we weren’t there. Here’s the first NICView we saw on July 12, when we got to the hotel.

NICView was amazing!

It was just so nice to be able to log on and see him, any time of day. I’m pretty sure every night when I was up pumping, I logged on and watched him. It’s truly amazing what technology can do, and how helpful it can be. It gave me so much peace watching his sweet little face when I couldn’t be with him.

The next day (Saturday) we went back to the hospital early in the morning. I was anxious to see Baker, and to possibly get the opportunity to hold him. (At this point, I had not held him yet and there was nothing more I wanted than the snuggle him forever). Our nurse that day was exactly what my tired mama heart needed. I always say people enter your life for a special reason and I honestly believe that our nurse that Saturday morning was an actual angel from the Good Lord.

We walked in and she happened to be by Baker’s isolette. I walked up and introduced myself to her as Baker’s mom. She smiled and the first thing she asked me was if I wanted to hold him. I remember breaking down again; I didn’t think I’d get to hold him for a while, but I immediately said yes. She told me that they liked to have parents do skin-on-skin for 1 hour, at least, and I said that would be no problem at all.

Before I got to hold him, Bake’s nurse showed me how to change his tiny diaper (which was hard because he was covered in cords), take his temperature, weight his diaper, do oral care and get him situated. Then, she got us situated and helped him and I have skin-on-skin time. Feeling his tiny little 4-pound body snuggled up to my chest for the very first time was one of the most rewarding moments of my life. Four days after giving birth to that sweet baby boy, I was finally holding him. He slept on my chest for over an hour. I didn’t ever want to put him down.

Finally, after 4 days, I finally got to hold our baby boy!

Skin-on-skin actually lasted close to two hours that first afternoon. It was such a blessing. But…like any mom, I was dealing with another bout of mom guilt, because I wasn’t with my girls. I remember feeling so happy every time I got to see Baker, but feeling so guilty that I wasn’t able to snuggle my girls at the same time. The mix of emotions that go along with a NICU stay, especially when you have other children that are home or staying with relatives, are tough. Shit, all NICU experiences are tough, regardless of the situation.

I remember talking to a nurse and saying, “Wow, my NICU experience isn’t that bad, there are some teeny, tiny babies in here.” And her reply helped with some of my anxieties. She said, “Don’t ever discredit what you’re going through. You are allowed to experience any emotions you need during this experience. All NICU stays are emotional.” I think that conversation finally gave me the ability to be content about NOT being ok with the whole situation. Even though we knew Baker was going to be ok, I was still allowed to mourn the loss of the “normalcy” I longed for after his birth.

The next few days in the NICU Baker made some huge strides. We went back every 3 hours during the day so I could change him, take his temperature, and give him all of his normal “cares.” Then, most days, we’d do skin-on-skin and I would get to snuggle him. It was the first time, I think in my entire life, that I didn’t feel pulled to be doing something on a to-do list, or work on a project, or talk to other people. Sitting there in the NICU, with my tiny little baby curled up on my chest, was right where I wanted (and needed) to be.

We did our best to FaceTime the girls whenever we got done spending time with Baker. I am so thankful for my parents and my inlaws for all the help they gave us during our time in Wichita. We couldn’t have done it without them. I seriously think Nora and Mila had an absolute blast while we were in Wichita. I know they missed us, but they also got to spend time with cousins and do all sorts of stuff.

Ty went home for a day and a half the first week of our stay and my mom came down to stay with me in Wichita. He said the girls were beyond excited to spend some time with their daddy and it did my heart good to spend time with my mom. My mom and I walked into the NICU one morning (I believe it was 4 or 5 days after we’d transferred to the hospital) and they had taken Baker’s nasal cannula out. That was a HUGE step, because that meant he was finally keeping his oxygen levels high enough he didn’t need the help of a ventilator or a cannula.

I was grinning from ear to ear when I walked up to his isolette because I knew my little dude was getting closer to getting out of there; like I said before, no nasal cannula was HUGE. The respiratory therapist walked up about the time that my mom and I did, she smiled and told me, “I just love seeing your smile and excitement.” I told myself daily that I had to keep a positive outlook, because my mental health could have gone to shit really fast if I didn’t.

Our big guy was nasal cannula FREE! A huge step in his journey…also, peep his awesome scowl that he was quite well known for.

I came to look forward to going to the hospital every three hours and do Baker’s cares. I think the entire time we were there, we missed one feeding. Ty and I tried to find stuff to do to keep ourselves occupied when we weren’t at the hospital, because even though I loved being there, I still needed a mental break from everything. Ty and I went shopping a few times, ate some really yummy food, visited some friends that we had in town, and even got stuck in a carwash one time. I was so grateful that Ty was able to be there with me the entire time. We watched a lot of Law and Order: SVU in the hotel and one afternoon, we watched Wimbledon for almost three hours.

Richard and Laurie brought the girls to Wichita one afternoon to see us – holy cow, they were WOUND UP! We went at PF Chang’s and the girls were so excited to see us, I don’t think any of us ate a thing. I’m thankful kids are resilient because even though they were away from us for two whole weeks, I know they were NEVER neglected. They still talk about the fun memories of spending time at Mema and Papa’s, and Papa and Nana’s and for that I am so grateful.

Baker spent exactly one week in what I call the “intense” portion of the NICU (essentially it’s where they get babies strong enough to move to the special nursery, where they don’t require as intense of care). On Friday, July 17 we got a phone call from the unit that they were moving Baker upstairs to the “Special Nursery.”

Once upstairs, he was in a satellite nursery with two other babies. There was a nurse in the room with the babies at all times. I still got to do his cares, nurse him, and do skin-on-skin, and he was making really good progress. We were hoping to be out in a few days. We were still staying in the hotel across the road from the hospital and we were super anxious to get home.

The satellite nursery was actually much easier on my mental status, other than when we did temperature checks. Those actually gave me crazy anxiety for a few days even after we got home. When you have a baby in the NICU, body temperature is huge. Babies are dressed in layers and swaddled so they can keep their body temperature up, and therefore gain weight. Baker didn’t do the best keeping his temp up sometimes and I would get such bad anxiety every time we’d check his temperature.

After Baker was in the special nursery for 4 days, we finally had the opportunity to share a room with him. Ty and I packed up our hotel room that we’d occupied for almost 2 weeks, and moved into the hospital with Baker. Neither of us were technically “patients” with him, but one of us had to be in the room with him at all times. We were in the same wing as the Special Nursery, and it was just like any other regular hospital stay.

I still giggle about “rooming in” with Baker in Wichita, because Bake and I would sleep as much as we could and Ty seriously did what he does in the hospital when I have babies – he finds a show and binge watches it – like genuinely binge watches it…(let’s just say he gets a little stir crazy).

After 13 days in the Wesley NICU, we thought we were finally going home. It was a Thursday. Baker wasn’t gaining a lot of weight, but his vitals were good, he was nursing well and the nurses and us ALL thought we’d be headed home. Even his temperature checks had been great. Then, the med school resident on a power trip came in for rounds. She didn’t think Baker was gaining enough weight and asked if I was nursing him correctly. I didn’t get sassy with anyone in the NICU, until that woman asked me that question. It was condescending and rude. Mama Bear came out.

I (somewhat aggressively) reminded her he was my third child and I knew what I was doing when it came to breastfeeding, NICU baby or not. BUT since she seemed to hold some sort of power to let Baker out of the NICU and go home, she opted to have us stay one more night, and directed us to give Baker this disgusting, super-nutrient dense formula crap. It smelled disgusting, Baker hated it…and the whole situation and power trip pissed me off. (Spoiler alert: he drank a total of 8 of those nasty bottles and then went back to solely breastfeeding. He hated it, it made him gassy and I wasn’t going to put him through it. Sometimes mama does know best).

But, moving on from the small annoyance that was the med student on a power trip: one positive about staying ONE more night in the Special Unit was that we got to have one of our absolute favorite nurses, one more time! Must have been a God thing because we all thought we wouldn’t have Erin again as our nurse, but we did and for that I was so grateful. Baker gave Erin the scowl NUMEROUS times, but I knew there was a genuine love there!

We were blessed with some of the absolute best nurses
in the entire world during our time at Wesley.
I still consider a few friends and am so grateful for the loving care my baby boy received!

Finally, on Friday, July 26, after 16 days in the Neonatal Intensive Care Units in both Hays and Wichita, we were released to go home. Happy, happy, HAPPY dance! Baker was topping the charts at 4 pounds, 12 ounces (little shrimp – but you’d never know it now). I remember crying that morning we were filling out paperwork because it almost didn’t seem real. I had waited for this day and we were finally able to take our sweet baby boy home. We loaded up the 400+ ounces of milk that I had pumped (and the NICU staff had froze for me), put our teeny baby in his car seat and left Wichita. We were finally on our way HOME!

Friday, July 26, around 3:30, I walked back into our home after 16 days away. My mom and the girls were there to greet us, and to say the girls were excited is an understatement. Looking back now, I never thought I would be able to handle a NICU stay. I never thought I’d be able to handle not having my baby boy with me every second of every day. But I did it. Ty and I did it. With faith in the Good Lord and an amazingly loving support system, we all survived our NICU stay.

The afternoon we got home, Baker received all sorts of loving from his big sisters.
Josefiak, party of 5!

The emotions (and triggers) that go along with spending time in a NICU with your child don’t just “go away.” I’ve cried a few times writing (and editing) this blog, thinking back to the experience and all the unknowns. I remember going to the grocery store a few weeks after we got home from Wichita and the beeping of the cashiers checking out customers almost gave me a panic attack. I seriously started crying in the produce section at Dillions.

Sometimes it randomly hits me and I can still see all the NICU lights; hear the alarms and buzzers, and the emotions come rushing back. But, knowing that we were some of the lucky ones who were able to bring our baby home keeps me grounded and rooted in my faith. There are some families who have NICU stays for 100’s of days, and some who didn’t get to bring their babies home. Almost daily I find myself praying for all families affected by NICU life.

Our NICU experience made me incredibly grateful for my family and friends, grateful for a feisty little boy with a spirit that never quits, grateful for resilient little girls and very grateful for my husband.

Thank you for taking the time to read about our NICU journey. I never thought I’d say that a NICU stay made me a better mama, but I really think it did. If you find it in your heart, please remember all families affected by a NICU experience during the month of September, and always.

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