WRITTEN BY KALI JOSEPH
In order to tell our NICU story, I should start with my labor & delivery story which coincidentally happened to be on Labor Day 2019. When I woke up with the sun that morning experiencing contractions two and a half weeks before my due date, I thought “Wow this kid is already into wordplay, what a joker she is going to be!” I labored at home until my contractions were making me yell obscenities and our shower ran out of hot water, until about 3:00 in the afternoon. We drove to the hospital, walked about a mile from the parking lot to the lobby (didn’t know about valet at the time and didn’t want my hubby to leave me) and were escorted to the triage room where it was determined I was 5 cm dilated and 50% effaced. I demanded an epidural, then labored in some version of peace for the next several hours.
The second trick our daughter played on us well into the night, when she decided to rotate 180 degrees so that she was positioned to be sunny side up. What was a normal-ish labor turned into something significantly more arduous and painful. Things stopped progressing at a satisfactory pace and when it was time to start pushing, I felt like I wasn’t making any progress at all. After three hours of pushing, I was given three options: c-section, vacuum-assist, or forceps. I chose vacuum-assist but Everly already had a full head of lovely hair so they couldn’t achieve the right amount of suction to pull her all the way out. They tried three times and were forced to stop. Then it came down to c-section or forceps, neither option seemed great especially since she would have had to be pushed back up for the caesarian. So I went with the less invasive option and my doctor, who was a forceps rockstar, worked her magic and delivered a tiny tiny baby at 3:15 in the morning!
Now the NICU story starts, or rather the special care nursery story. Our daughter was immediately taken across the room to be monitored by the special care team. I figured they would take her for a few minutes to make sure everything was working okay then give her to me so we could try nursing and start developing our out-of-the-womb mother-daughter bond. It didn’t go down that way, and almost nothing went down the way I had envisioned it for nearly ten weeks into her life when she was finally strong enough to come off of oxygen.
Possibly due to her traumatic birth, possibly due to something unforeseen in utero, our little one was having trouble breathing on her own. About forty five minutes later, I was allowed to hold her for the first time for about 60 seconds and then she was taken upstairs to the SCN. I was taken to the bathroom then to rest in the maternity ward. I didn’t see her again until 9 or 10 the next morning when my husband so kindly pushed me in a wheelchair all the way to her little station with the other tiny humans. At the time, it seemed like she just had to grow a little bit then would be allowed to come off oxygen, have her feeding tube removed, and come home with us. That was not the case. She needed to be placed in a UV chamber to deal with some jaundice, she needed to be connected to a CPAP machine, and she needed to stay in the SCN for at least five more days following a significant drop in her pulse ox on her third night.
It was around then that time that one of the doctors treating Everly ran an x-ray to confirm her hypothesis that there was a problem with Everly’s diaphragm. They found that the right side of her diaphragm was paralyzed so it couldn’t hold the organs down to make room for her tiny little lung to expand sufficiently.
After confirming this diagnosis, the next step was to wait to see if Everly could keep her oxygen levels up on her own without the CPAP machine. Each day, they tried to reduce the amount of oxygen, and each day we would be updated as to whether or not our discharge date was coming any closer.
Then they determined that she was aspirating the breast milk that I had been pumping at home. Literally, pumping which felt like the only thing I could do to help and protect her, turned out to actually be putting her at risk. I was instructed to continue pumping if I wanted to but that it could be several months before a swallow study could confirm that she was ready to drink such a thin liquid. My goal had been to nurse her for as long as I could and to our dismay, that turned out only being about a week in total.
So while the doctors determined the lowest level of oxygen Everly could safely be on and the thinnest liquid she could safely drink through her mouth, my husband and I did our best to show up for Everly every day. For the 19 days between my discharge and hers, Chris and I drove back and forth from our home in Natick to the SCN in Newton. My own recovery was slowed significantly during this time due to stress, and all of the movement required to get from my home to the sixth floor of the hospital. Frozen maxi pads and witch hazel foam became my two best friends.
So after the doctors determined the conditions under which Everly could safely be at home, they had to train us how to use the oxygen tanks and also make sure it was safe for Everly to be in her carseat. The night before her discharge, she failed her carseat test an hour in and for a second it actually seemed that her discharge would have to be pushed back even further. Then a voice of reason chimed in and said, let’s just push her oxygen up as high as she needs to get home since she is already on it anyway. Once this was decided, we spent the next few hours on the phone with our insurance, making appointments, and getting referrals for several specialists she would need to continue seeing for the coming months. At 4:00 pm on September 21st, (finally!) two days after her due date, we were able to return home with our teeny tiny little one, her travel oxygen tank (and backup oxygen tank) and a pulse oximeter to let us know she was safe.
We are so beyond grateful for the high quality of care she received at the Special Care Nursery. The fact that they were able to diagnose her very rare condition, is the reason she was able to come home so quickly and make such a great recovery in the months that followed. Everly was on oxygen for another six weeks at home and came off it following a week long hospital stay due to viral meningitis. Since then, we have had no ER visits, been discharged by all of our specialists, and are enjoying (surviving) the challenges of parenting a healthy baby!
What I wish I had known
The NICU experience is A LOT at times. You have a ton of loud beeper machines hooked up to all the babies and have alarms going off all the time, you want to just focus on your baby but there can be a lot of specialists coming by to check on you and run tests with results that sometimes can be tough to take. There will be ups and downs, 2 steps forward, 3 steps back and sometimes no steps at all.
Advice for a parenting experiencing the NICU
Take advantage of all of the knowledgeable nursing staff! The special care nurses taught us how to hold our tiny baby without disrupting her too much, how to nurse, how to bottle feed, how to change diapers, and so much more. Being able to learn from these nurses, both by watching them and getting their coaching on how to properly support her head, protect her airway and take care of her made us feel much more confident for when we did bring her home.
The NICU can be a stressful place but you have the best possible people taking care of your brand new baby and it WILL BE a distant memory one day but in the moment it can feel scary and you can wonder ”is this going to be forever?“ Nobody plans to have their baby head to the NICU but they helped us make the transition to becoming parents and doing everything they could to bring our baby home happy and healthy.
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