What a NICU Hospital Stay Can Look Like

Many mamas out there have no idea what it’s like to have their baby stay in the NICU. For those women out there who are experiencing the NICU, I hope things get better. I’m breaking down my NICU hospital stay timeline for myself to look back on and for those who are curious.

My NICU hospital stay has been exhausting for a different reason compared to other ‘typical’ NICU hospital stays. My baby was born with spina bifida and we were told that the baby would have an extended period of time in the NICU. The baby immediately was swept away once born and had the lower back bandaged. Not even 24 hours old yet, my baby was taken into surgery to have lower back closure because of his spina bifida.

The first week of our NICU Journey

Like I mentioned, the back closure surgery was done pretty shortly after birth to make sure the exposed nerves don’t become more damaged. Because this condition can affect a lot of lower extremity issues, physical therapy was immediately on board. We dealt with a lot of specialists that first week, especially for the surgery. Our NICU hospital stay encompassed specialists from physical therapy, infectious disease, neurology, neurosurgery, occupational therapy, palliative care for pain management, urology, ENT (ear, nose, throat), and possibly one or two more.

Infection was a risk, but the baby managed well. Pain management was on the case to make him as comfortable as possible with the sutures and pain that comes with any kind of surgery. Therapists helped with creating little foam splints for his feet because he was laying on his stomach for a while.

He had a drain in his lower back that was monitored closely and his wound dressing was cleaned often. They had to place a catheter every few hours for us to see how much he was peeing vs how much he was retaining. The kidneys and bladder can be affected by the surgery and condition. Because they weren’t sure how well the organs would work after surgery, it was done until eventually spaced out and discontinued altogether.

Head Monitoring during our NICU hospital stay

Next, his head was constantly being measured with weekly head ultrasounds. Because of his condition he could have built up liquid and pressure within his head which would be damaging if left untreated. Most children with spina bifida will need some sort of surgery to divert this fluid buildup. A shunt or ETV can be done but a shunt could have a lot of risks associated with it with multiple ways for it to fail. If it fails then the person would have to get surgery to fix it. A shunt is done in the brain, just like an ETV and drains into the lower part of the body. An ETV is drilling holes in part of the brain to drain the fluid and the percent of success is about 30-50%.

We held him, as long as he remained parallel to the floor (flat and never able to burp upright or be upright at all). He latched right away when I was with the lactation consultant and she said he was doing an amazing job.

Second week of our NICU hospital stay

He was intubated. He was doing great and was recovering well from his back surgery. No infections, all labs were great and then he had breathing issues. It was essentially a mystery to all specialties and ENT wasn’t able to put a scope down the throat to see what caused this event. The apnea happened after the stridor developed. It’s possible that he aspirated when OT came and fed him his bottle. To this day no one understands why that happened.

I cried everyday and was worried day and night. My baby was intubated and he was having multiple apneic events. He was fine and then he wasn’t. It was a crazy reminder that he’s not just in the hospital, he’s in the NICU where very sick babies need extra help. Anything can happen to him at any moment BUT he is in the best place possible. If something goes wrong, he’s in the best place to survive.

Anxiety During his Episode

Slowly they weaned him down on his oxygen. They ordered many tests from an ECHO to check his heart, to seizure measurements with an EEG. Nothing was making sense to them and especially not to me. How could they not pinpoint what exactly was happening.

Every text I got at night would make me jump because I was scared it was going to be the NICU team telling us that something bad happened. Whenever there was a midday call I would get concerned. I was checking his chart every 15 minutes for any updates. I was seriously a wreck and could NOT control my emotions. Having a baby in the NICU because he had a diagnosis and not because he was born early is just a different feeling. If my baby didn’t have this condition, he wouldn’t be here with these other tiny little babies.

After they kept tracking and noticing his head was increasing, we finally got the call from the neurosurgery team. The team said we would need to go ahead with a procedure to get rid of the liquid. They wouldn’t make that call unless absolutely necessary. This happened right after my baby was extubated. He was GETTING BETTER only to have to be dragged back to the OR (operating room).

Which Procedure We Chose during his NICU hospital stay

We had different options and each have their own risks. After speaking with other attending physicians that my husband knows, we went with the 30-50% chance of him never having to get a shunt – the ETV. This comes with a risk too – seizures.

This entire time of him being intubated, he was off bottles and was being fed through a tube. We didn’t hold him at all because we didn’t want his oxygen saturation to go down. We were especially afraid of him getting worse because he does have crazy vitals when he gets angry. The lactation nurse gave us some hearts to place on our body and place in the crib with him so he can smell us and feel more comfortable. He became pretty irritable and was easy to console, but they thought he was probably in pain and placed him on scheduled gabapentin. He was better.

Third week of our NICU hospital stay

He stayed on tube feeds and had to get his procedure on a Tuesday. The surgery felt like an eternity. It was started early in the morning and we didn’t get a call until around noon. It was a ‘successful’ surgery which means that it had no complications and everything went as it should. Part of his hair was shaved and his head was sewn up beautifully.

Seizures

Then he had seizures. Blank stare, shaking limbs, diverting eyes. All of these symptoms were seizure like activity. Keppra was loaded into him to help combat the active seizures even though he was on a prophylactic dose because this procedure has a risk of seizures. The reason is that they go through parts of the brain that can trigger seizures and it becomes irritated. He unfortunately had to deal with these seizures.

After placing another EEG, the neurology team noted seizure activity and had a plan in place. Seeing him with his blank stare was extremely overwhelming. Thinking about everything he has been through to just have more issues was heart breaking. I told my husband that whichever procedure we chose, that the outcome would not be our fault. No matter how much pain or issues that our baby went through was because we thought it would give him the best chance at being normal.

Again, more tears were shed and we called the nurse every night before going to bed to check up on him. We had been doing this since he was intubated. He was seizure free once they switched his medications. A side effect of this medication is apnea and thankfully he hasn’t had any issues with his breathing so far while being on it. His oxygen was being tracked and his movements weren’t seizure like anymore. Everyone was watching and waiting for him to recover.

One Month Coming Up of our NICU Hospital Stay

Next week he will be one month and will have been in the NICU for a month. Our expected stay was 2 weeks and we have already exceeded it. Regardless, I am so happy that our NICU team from all specialties and our loving nurses were genuinely there to help my baby. Our first born has become a little celebrity there among the nurses and doctors.

We got one nurse that suggested that we hold him. It would help him get better and recover. We did that the very next day and our baby was smiling and laughing in his sleep while being held by his daddy. Seriously, there is no better feeling than seeing your baby smile and not be in pain or have a blank stare from a seizure. He has been looking so good lately and we are hoping at this point that the procedure worked. If it didn’t, we would have to place a shunt which would send him off for another brain surgery.

Everyday I pray ‘God please let me have this baby. Give me my baby that I so desperately need. Let him be healthy and come back home.’ Everyday is so up and down and unknown and it is SCARY.

Fourth Week

We started off the week really well with gaining weight. He’s now 9 pounds 2 oz! This week he will be ONE MONTH OLD which blows my mind.

OT has seen him again and let him take a bottle but only 15ml out of 75ml per ‘feed’ to make sure he doesn’t aspirate. He’s been taking them so well that our Fellow said he is able to eat as much as he wants out of a bottle. He will also be moved to a different area in the NICU where it’s quieter.

Neurosurgery took out his back sutures and said that he doesn’t have to lay parallel to the floor anymore. He’s been laying either on his side or parallel to the floor – he wasn’t able to be burped like normal or held like normal so this is a VERY BIG DEAL for us.

The baby has also been looking so much better. He’s looking around, awake a little more than he has been and tracks pretty well with both eyes. I was so afraid he wouldn’t be able to after his seizures. He is still on seizure medications and I’m not sure if we will go home with them.

Timeline

On 8/8/2024 – his first month of being alive, he was downgraded to the less intensive part of the NICU.

8/9 – the fellow called to let us know that he was moved and that he took a lot more of his bottle feeds. He went up to around 41% of all feeds through a bottle. This was only about 15% the previous days. When we visited, it was a much quieter and private ward of the NICU. Our nurse was AMAZING and taught us how to feed him side lying but a little bit upright. He is high aspiration risk, so we have to watch him and listen to him when he drinks. It was extremely terrifying to hold him in this position. His head is still very large and doesn’t fit well into my hand to prop him up with confidence. He did well and was looking all around.

8/10 – The OT note mentioned he was taking his ENTIRE BOTTLE BY MOUTH. It really is the little things that are celebrated while your baby is in the NICU.

Week 5 of Staying in the NICU

8/12

I got a call from our fellow saying that he was doing so well with his bottle feeds that they took out his NG tube. They will continue watching him but he seems to have improved really well. Also, that they are looking at starting discharge papers, so she will call us when they have a plan in place. When the date gets closer to him being discharged, I’ll have to follow up with all the specialists and start getting appointment dates. *Big sister and I are both sick. I think with strep but I’m not entirely sure. She has a cough and runny nose. Dad is back at work this week. The timing… if he ends up being discharged this week BUT I WILL TAKE IT.*

8/13

The Fellow called and said we should plan for discharge to be tomorrow! They don’t care what time we show up because they know my husband is working. I’m still sick. On day 2.5 of antibiotics but to be honest, it might just be a viral infection which doesn’t respond to antibiotics. My daughter is still congested and sick. We expressed our concerns of discharging our NICU baby to a house where everyone is sick. The fellow said it would be okay and try to separate the two kids as best I can.

We need to get a pediatric appointment following up shortly after discharge. He will need to get several medications that will be continued at home. I need to follow up with other specialists. The NICU nurses and fellow will make sure that the baby’s oxygen will be fine with his car seat because his head is so large that it might wobble over and create issues. There is just so much going on that I’m feeling overwhelmed but so thankful that my baby will finally be home with us.

Finally Home

The baby was finally home. We went to the hospital after my husband got home from work. We arrived at the hospital around 6 pm and walked through all the discharge paperwork with the current nurse who was taking care of him. That nurse was absolutely amazing and so helpful. She walked me through everything, got all my milk from the milk room, and packed all of Vincent’s goodies.

Nurses started trickling in to say goodbye to us, Vincent, and our older daughter. It was extremely bittersweet saying goodbye to everyone we had come to rely on. Those nurses saved our baby, kept him healthy, and loved him as if he was theirs. I will forever be grateful to them. While Mia was saying goodbye to the respiratory therapist and nurses, I was talking to the lactation consultant who was giving me tips to transition to fully breastfeeding. We were getting thrown so much information.

Pediatrician Visit the Next Day

Our pediatrician visit was the following day so we had to make sure to bring certain instructions and discharge papers with us to make it easier for them. I had to make sure that the baby was getting all of his medications on time, as the nurses had been giving him. We had recently gotten a chest freezer to store all of my frozen milk and thank goodness for that. I had so much milk to bring home that it was stacked in a huge cooler that they had to wheel down for us because we couldn’t fit it in a traditional wheelie cooler.

The car ride home was less scary than our first-born’s – I was also pretty well healed by now. We stopped at subway to get some sandwiches while it was thundering and raining outside. I remember thinking it was such a beautiful stormy day but I needed to just be home already.

And Beyond

Nights were scary. The constant getting up with a newborn was exhausting. We have an owlet monitor that is able to track his oxygen saturations and heart rate. He had stridor while in the hospital so anytime I heard a little squeak I would wake up. Even with this, I felt more at peace with having the owlet anklet on.

There are a lot of specialties I had to visit and make appointments for. Not to mention the medications I needed to get and keep track of. We asked for a physical therapy referral and were able to get one. I was told how to stretch him and what to work on.

From here on out there will be even MORE appointments. I won’t have the help of friends or family. My husband will be working long hours. I will have to drag my daughter around with me to all these appointments. Everything might be exhausting but we are so incredibly thankful for him to be home and will do whatever it takes to continue his recovery and strength.