What is the NICU? According to Google (I obviously chose the most reliable source), a NICU is a neonatal intensive care unit. Also known as, an intensive care nursery specializing in the care of ill or premature newborn infants. We’ve all heard of it. Some of us may have been in the NICU ourselves as infants, some maybe work in the NICU and some know all too well what it’s like to be a parent with a child in the NICU. I’m not going to lie, I can’t really sit here and say I’m an expert by any means. We were fortunate enough to only have to spend 7 days, one short week, in the NICU with Kai. I personally know people who spent MUCH longer there. (Shout out to my girl Becca, her hubby Nick and their little fighter, Ollie!) But dang, we all have our battles and those 7 days were some LONG. HARD. DAYS.
I kept a journal from our time spent in the NICU. One – because a nurse recommended that I do so. Two – because I was doped up on so many pain meds Lord knows I would had never remembered the details of what the many doctors were coming in and telling us. Three – because I wanted to be able to read back over it later, reflect on where we started and even read it to Kai someday. I’m so thankful that I did. I tracked things such as specific nurses and doctors names, medical jargon that I still don’t really understand to this day and most importantly, significant dates and times. I’m not going to bore you all with the details but I will give you an outline of what Kai experienced at Nationwide Children’s Hospital in the NICU his first seven days of life.
Monday, December 11, 2017
- 12:20pm: Kai arrived by transport team to Nationwide Children’s Hospital
- Danny followed and met him there along with his parents (my mother and father in law, Nancy and Rob)
- Once admitted: had a heart echo which showed three small holes in his heart and would follow up with Cardiology
- Had an ultrasound of his head, confirming the amount of fluid in his brain and officially diagnosing him with “hydrocephalus” (meanwhile, I’m still stuck at St. Ann’s Hospital recovering)
- 9:10 pm: Kai went back for his MRI
- Danny told me that he did really well during it (sometimes not so easy with infants)
- 10:35 pm: Came back from MRI and blood drawn in prep for surgery
- Middle of the night: Long night of alarms and uncertainty
- Several times throughout the night Kai choked on amniotic fluid
- Had a low resting heartbeat and low oxygen in his blood
- Danny stayed overnight with him, obviously getting little to no sleep
- Around 4 am got a sponge bath that he didn’t seem to mind
- He was very cranky, most likely due to head pressure/headaches caused by the fluid
- He also hadn’t been allowed to eat at all since he had been born! (besides a little sugar water on a pacifier because he was being prepped for surgery)
Tuesday, December 12, 2017
- 8:30 am: Kai’s MRI results came back and Danny called me with the neuro-surgeon (as I’m still stuck at St. Ann’s at this point)
- Determined that he would be having shunt surgery today because there was no conduit for the fluid in his brain to drain
- He had aquaductal stinosis, his “tube” to drain fluid didn’t form properly
- For the surgery, they would make a “c like” incision on his head and a small incision on his stomach, everything underneath the skin
- There would be a tube running from his shunt in his head, down his neck and into his stomach
- 12 pm: Kai went down to the pre-OR
- 12:30 pm: Kai went back to the OR for surgery
- During the surgery, our pastor, David Bondurant, surprised Danny and his parents at the hospital and prayed with them
- 2:30 pm: The surgeon came out and told Danny it was a textbook procedure, the shunt was placed right where he wanted it
- Most likely caused by blood causing a blockage somewhere while in the womb but will never know for sure
- The fluid was within his ventricle, not the brain tissue, which was a good thing
- 4 pm: Kai returned back to his room in the NICU to recover
- Had to be incubated until he was stronger
- 8 pm: I FINALLY was discharged from St. Ann’s and made it over to Children’s to meet Kai again after our brief meeting after he was born
- Yes, I had a C-section and was released the next day, I was determined to get to Children’s and in a wheelchair
- 9 pm: His IV was leaking and they had to change it, which was a struggle because he has rolling veins
- To this day, getting an IV in him is a nightmare
- Middle of the night: Danny and his mom stayed at the hospital with him, I came home to sleep since I was still recovering too
- A much better night than the one before, he slept a lot and was getting breathing assistance
- Was taken off his vent around 4 am
Wednesday, December 13, 2017
- 7:55 am: The nuero-surgeon came to check on him
- 1:00 pm: I was able to finally hold him for the FIRST time
- He was still hooked up to some oxygen but not completely incubated anymore
- 2:25 pm: He took his first bottle and it didn’t go so great but we were optimistic
- 3:00 pm: Cardio came to check on him and discuss with us the three small holes he had
- Confirmed he had a hole between his septum in the large chambers that should close up
- He had a large PDA which is a blood vessel that typically closes up on it’s own but we needed to follow up on that
- Evening: His feeding began to improve and I was pumping to try to get some breast milk (since we started life off a pretty unconventional way)
- 11 pm: His breathing assist came out
- Middle of the night: He had his blood drawn for jaundice
- Danny and I both stayed because we wanted to help with feeds
Thursday, December 14, 2017
By this point, we were just waiting to see how well Kai was feeding to be able to go home. His incision looked good, vitals were strong and he seemed to be recovering quickly from his surgery. We were hopeful that he would continue to eat well, be able to get his IV out and head home! He did end up being a little jaundice and was put under the light to increase his bilirubin levels.
Friday, December 15, 2017
This was a ROUGH day. Danny and I had slept at home because we were EXHAUSTED and had an awesome NICU nurse, Nicole. There was a live feed camera we could watch from our phones to see how Kai was doing and she would leave us notes in the middle of the night. It was adorable.
He continued to be under the light because he was still a little jaundice. And his nurses ordered him Tylenol because they believed his irritability was due to his surgery recovery and just being in pain. Rightfully so. Because he was so distressed, starting to breastfeed was a struggle and not necessarily the most successful at the beginning. Thankfully, Children’s provided me with lactation consultants to help, who were WONDERFUL. Danny and I went home that night, planning to get more rest. But I continued to watch the Children’s camera (which can be good and bad) and saw how upset he was and couldn’t handle it. Around 1 am, my mom and I went back to the hospital to spend the rest of the night with him. He only seemed to sleep when he was being held at this point.
Saturday, December 16, 2017
By now, we were just praying we would be able to go home for Christmas. Kai seemed to be back on the upswing and his jaundice was improved enough that he was able to be taken off of the light. His head measurements were going down, which is what we wanted. That proved that the shunt was working properly and the excess fluid within the brain was draining. A music therapist came on this day and we were able to record Danny and I reading books to Kai to leave with him when we weren’t there. Nationwide Children’s has so many awesome therapies and resources, it’s wonderful. He was able to successfully breastfeed for the first time this day and we were ecstatic. If that was one thing I could provide him to help in all of this, I was going to do whatever it took. He had his first “official” bath this day (besides just being wiped down in prep for surgery) and the nurses let us help. He didn’t love it but also didn’t hate it. So, win in my book!
Sunday, December 17, 2017
Santa Claus came to visit the NICU this day AND we received the best gift possible, we were able to GO HOME! Talk about exciting and overwhelming all at the same time. When you’re being discharged from the hospital, the nurses provide you with all of this documentation and resources. We literally got a giant binder of information. We were required to watch several training videos before getting to leave and had doctor after doctor come in the room with special instructions. We had to be cleared by nuero-surgery, cardiology and the rounding NICU physician before being able to leave.
And just like that… we were headed home. With a baby. And had absolutely no clue what we were doing. But we knew we loved him more than anything.
As always, remember, it’s okay to be “unfine”.