7 Days in the NICU

Our tough journey did not end for Ethan after he began breathing again in the delivery room… it remained challenging for several days.

Day 1 – Oxygen Levels up

Terry with Ethan - Day 1 of
the  NICU

During the first 24 hours Ethan was having trouble keeping his blood oxygen levels in a safe range – they had him hooked up to oxygen monitors and oxygen. He had an IV to keep his fluid levels up and to administer antibiotics in case it was a bacterial infection that had caused his low oxygen levels. He was given a little colostrum so he would start getting the nutrients he needed. He was in a high risk room with babies having breathing troubles.

Day 2 – Swelling in his head

Holding Baby Ethan -
Day 2

It was during day 2 that the doctor noticed that Ethan’s fontanel had swelling in it. She told us this could be any number of things, from a bacterial infection to a virus, to fluid in his brain. So the tests began. He was already being tested for a bacterial infection, so the next was to check for fluid in the brain. He was scheduled for a CT Scan. The CT Scan was negative. He was scheduled for an MRI. The MRI showed no fluid in his brain.

His Oxygen levels steadied and remained in the safe range for long enough to remove his oxygen.  I was told in the NICU they woke, changed and fed him every three hours 24 hours a day. I was there most of the day anyway. Even at the midnight, 3am and 6am feeding… I didn’t miss one!

Day 3 – Spinal Tap

Poor little NICU baby - so many
tests!

The last thing to test for, since the CT Scan, the MRI and the bacteria tests all came back negative was for a virus. This was hard for me, but we signed off on the Spinal Tap. To this day I don’t know if that was a good decision or not. The Spinal Tap came back negative.

Ethan was the fussiest baby in the NICU – he cried unless he was being held and rocked. Between the CPR, the swelling in his head, and the IVs, et al… I’d be fussy too! Apparently this was another “Cause for concern.” The doctor decided she needed to bring in an Occupational Therapist to assess him.

At the end of day 3, suddenly, just like that, the swelling started going down. Ethan was moved to a slightly lower risk room of the NICU, which essentially meant less nurses per baby. For me it meant a step in the right direction. We were given a goal – to feed Ethan 5ml and then to raise it by 5 ml every three hours until we got to 40. You know how I love goals… apparently Ethan does too. :-)

Day 4 – No more tests

Sleeping NICU baby

At this point Terry and I started feeling like Ethan was really getting better. He was eating better and better. I was really starting to feel pretty confident we’d be going home soon.  The Doctor was concerned because there was no “cause” for his ailments. At the time I didn’t really care – he was getting better. Now I think I care a little more… but I’ll talk more about that in Post #4.

They moved Ethan to the “Healthy Baby” NICU… the place where most of the babies go right before they’re discharged. We loved this NICU – we had a little section all to ourselves. Ethan was given a new goal – eat 40ml every 3 hours. Has anyone ever tried to make a newborn do exactly what you want him to do? This goal was attainable, but frustrating! Sometimes he would eat like a rockstar, and sometimes he would barely get through 10 ml. It sounds silly now, but it was so incredibly nerve racking. Our ability to take our son home was completely 100% based on his ability to complete this task.

And then someone from Social Services came to talk to us, which we were told was just procedure. I’m sure Terry and I were one of her better visits that day. We may be unconventional but we’re pretty darn normal. Still, it was unnerving – having someone who has the ability to exert control over decisions regarding your family asking such personal questions.

Little man doing better...
just want to take him home!

At this point I was getting kind of annoyed – he was doing so well, I just wanted to take him home. I was tired of sticking to this schedule, I was tired of asking permission to take my son out of his pod, I was tired of being told how to feed him, change him, rock him… I was tired of being under the microscope. I was ready to start feeling like a “mom”…

To make matters worse, this was the day the Occupational therapist came to assess Ethan’s “mood”, if you will. (How does a 4 day old have a mood?!) However, she came just 20 minutes after they moved his IV for the third time! Now he’d had his IV moved from one hand to the other, and since he was out of hands they moved it to his foot! He was a basket case, fussy and crying. The Occupational Therapist began writing up her report and I lost it. I told her it was completely unreasonable to assess my son on his behavior such a short time after enduring more pain. She agreed to come and do a follow-up assessment later that afternoon. She did, and as luck would have it he was as pleasant as pie. Finally I had a win!

I was discharged myself this day, which freaked me out to be going home and leaving Ethan, but we were able to stay for 2 additional nights in the Children’s Hospital overnight rooms for families.

Day 5 – New NICU, New Challenges

Little sleeping baby boy!

Ethan would sometimes do well and sometimes miss the mark on his 40ml per 3 hour feeding schedule which again was frustrating. Plus, while all the nurses were wonderful, they were all different! One would tell us it would be better if we let the nurses do the feedings. Another told us we wouldn’t be able to take him home if we couldn’t do it ourselves. One told us we should use a smaller nipple size for the bottles. Then we found out we couldn’t take him home if he wasn’t eating out of the bigger nipple size bottle. One nurse told us we could take him out of the pod ourselves. Another told us not to touch anything. We felt a little whiplashed!

JUST TELL ME WHAT TO DO! I’LL DO IT. I JUST WANT TO TAKE MY SON HOME!!

And then Ethan had his circumcision… well guess what this meant? He was fussy, in pain and didn’t feel like eating. They told us it would be at the minimum another 24 hours because he hadn’t met his quotas.

But – Ethan’s IVs were finally removed and he was given an open Pod to sleep in. We were so close!

Little Luminescent Eyes! Already he had endured so much!

I think this was the night I finally let the pain, fear, joy, anger, frustration and lack of sleep take its toll on me. I had a nervous breakdown in our little family room and bless Terry’s heart – he just held me while I cried. This is sort of how I operate… I run myself past the point of exhaustion, I completely fall apart, and then I’m all better – ready to hit it again. Terry, as usual, was my rock!

Day 6 - Smooth Sailing

Midnight feeding - so close
to going home!

This was the day I knew everything was going to be ok. The Occupational Therapist came to visit Ethan
again and he was just a doll. He ate like a champion. He slept great. We finally got to dress him in his baby clothes… but everything was sooo big on him!! He was just a little tiny thing weighing only 6lbs 7oz.

Unfortunately we weren’t able to stay in the hospital for anymore nights… we had to spend the night at home. It was so hard. But actually, finally sleeping in my own bed was just what the doctor ordered.

Day 7 – Ethan Comes Home!

Dressed and ready to go!

I spent this entire morning treading carefully on eggshells… I didn’t want to say or do one tiny thing that might make the doctor feel that Ethan needed to stay for more time. She was hesitant to let him come home because we never did find out what caused both the low oxygen levels and the swelling in his head. Like I said, at the time I was content to accept it as “one of those things” and just get him home!

We watched a video on infant CPR and the Heimlich. We took a test and passed. We dressed our son. We filled out many, many forms. We held our breaths. We shook hands and gave hugs.

We went home and started our life together!

GOING HOME!!

One special Thank You

I do need to give a very special thank you to my mother and my stepfather, John. They spent the entire week at our condo, taking care of the dog, cleaning as needed, and bringing us food. We didn’t give one thought to what was going on back home… Terry and I had so much on our plates at that time I don’t know what we would have done if we had to think about the homestead as well. Thank you so much!! We love you!!

Next Blog - #3 So What About Terry and I?!

Future Blog Posts- Stay Tuned

#4 Why are Ethan's eyes always looking to the right or left?