As mentioned in my “The Day I Became a Mother” blog post, Baby K was wheeled off to the NICU for respiratory issues right after he was born. Although he joined us some hours later, he had to return to the NICU the next day and this time, baby A joined him. The reason being that they tested Coombs positive and their bilirubin levels were pretty high so they needed light therapy in the NICU.
DAY 3
E and I started our daily trip to the NICU to visit our boys on day 3 of my recovery. Luckily, the NICU was able to accommodate them to be in the same room. It was the Blue Unit Room 7 & 8.
This was my first time really seeing Baby K. He was long and lanky and was receiving light therapy. I knew light therapy is common but seeing him in the box made my heart break. We then learned that he was also having desaturation in his oxygen level. His vitals monitor would start beeping every so often. Every NICU parent would know this beeping sound… it stays with you for life.
They were so tiny and fragile looking. I felt very clumsy handling them especially since I was so tired from my cesarean section. The lactation consultants made their way around to our room to help me with their latch so we practiced breastfeeding on both baby A and K. We did very well. Seeing them so small made me very motivated to breastfeed and pump. They were eating donor milk at the time and my mother instinct kicked in to be the sole provider. Unfortunately, I lost a lot of blood so my milk didn’t come in yet and I was producing only 2-3 drops of colostrum at most. However, from day 3 on, I pumped around the clock every 3 hours.
DAY 4
On day 4, the NICU nurse practitioner thought baby A was safe to be discharged from the NICU. E and I tried to challenge this since Baby A was still in a biliblanket and we didn’t want the boys to be separated. To add to the complexity, I was getting discharged so my postpartum room got transferred to baby A and I had to stay and board with him. This caused a lot of stress since I was no longer a patient so I wasn’t receiving nursing care.
With the Covid one visitor (who can stay after 10pm) policy, E can no longer stay in the room overnight to help me since I was baby A’s visitor. Now we have one baby in the NICU and one in the postpartum unit. E could technically go stay with Baby K in the NICU but there was no sleeping accommodation. We did what we thought was best and just stayed put. There was a nursing shift change and the nurse, who told us of the visitor policy, shift ended. E managed to stay with us overnight. I was having such a great postpartum experience until they decided to separate my babies and my support person.
Since baby A was now the patient on the postpartum floor, the postpartum nurses were to care for him (bring his donor milk, change diapers, and etc.); however, they are postpartum nurses. We had to be proactive to remind them to bring baby A’s milk, and did all the feedings, diaper change, swaddling, and etc for him. To think that I was expected to do all of that alone, without E’s help, and recover from my cesarean section was ridiculous!
DAY 5
Unfortunately, on day 5, when E was burping baby A during a feeding, baby A’s face turned blue. I had to rush out to the hallway to find help. I calmly told the front desk nurse who alerted all the floor staff. Ten medical providers were in our room assisting Baby A before we knew it. Luckily, his color came back and he was breathing again. They took baby A to the nursery and ultimately told us that they’ll bring him back to the NICU for closer monitoring. This upset us as we felt he was discharged too early from the NICU and this back and forth was causing a lot of stress for all of us.
I no longer could stay in the postpartum room since baby A was going back to the NICU. We packed our bags and walked over to the NICU to stay with our boys for a bit. Going home was one of the saddest moments for me. I remember us walking out of the hospital with no babies. We still had their going home outfits in our suitcase. It was a cloudy day and the ground was wet from the drizzling rain. I cried as we walked to the car. I felt so empty. I felt like I was missing pieces of myself.
I felt very helpless at home and that all I could do was pump so that I can provide them my breastmilk. My milk finally came in on day 6 and I remembered feeling so happy. To this day, I think remembering their NICU days keeps me motivated to pump every 3 hours for them.
POST DISCHARGE
Our days looked very alike for the next three weeks. We would head over to the NICU around 10am, drop off breastmilk, breastfeed/bottle feed the babies, pump in the room, grab lunch, breastfeed/bottle feed the babies and leave around 4pm.
Around day 10, the babies were not taking in their feedings so they decided to put a NG tube in both of them. This was on top of the light therapy that they’ve been receiving on and off. They were both not gaining weight and my 5.5 lb babies soon weighed a little over 4lbs. On top of that, Baby K’s had been experiencing ongoing desaturation in his oxygen level. We would get anxious and check to see if his face color changes to blue each time his monitor beeped. Their care team said that their inability to feed and the desaturation were due to their prematurity.
We started getting frustrated since we felt like nothing was progressing. Their bilirubin levels were going down slowly and they were still receiving light therapy, they still had their NG tubes in for feedings, and Baby K was still experiencing desaturation. It seemed like discharge was no where in sight. We would ask about discharge every 2-3 days and were always told the same thing, “We will see in a couple of days.”
Baby K finally seemed to be trending upwards when he didn’t have any desaturation episodes for five days, which was one of the discharge criteria. The babies were starting to increase their feedings and slowly gaining weight. All of a sudden, both babies started experiencing desaturations. The medical team was thinking they could possibly have an infection.
STRESSFUL NIGHT
We got a call one night around 9pm when the fellow on board wanted to start antibiotics for a potential infection. We rushed to the NICU to find that they had put a “respiratory infection” sign up on their NICU door. Everyone was gowned up in the room and the twins were getting tested for covid. The fellow explained to us that they think the risk of not giving antibiotics was higher at that point. She also said that they wanted to run some additional scans and do some urine and blood tests. I thought everything was medically unnecessary, but at that point, I didn’t want to risk anything.
So in came in the x-ray machine, the ultrasound for a head ultrasound, IV lines, and catheters to collect urine from both boys, and they got pricked on their feet multiple times to collect blood. Here I was, just helplessly watching my small fragile babies with NG tubes, IV lines, and bandaids on both of their feet lay there crying in the dark. Their cries filled the dark room. It almost seemed like we went ten steps back. I felt like I failed them and should’ve delayed my cesarean section for another week. At that moment, I had E tell them that he’s a doctor. I needed to put some pressure on them. E asked to look at the x-rays and informed the fellow that he’s a radiologist. I could sense a sudden shift in attitude.
Luckily, both the head ultrasound and chest x-rays were normal. The labs came back normal. The only thing that came back abnormal was the urine sample, in which, both boys had an UTI. We thought it was weird that both boys got an UTI – what were the chances? We were thinking that the sample got contaminated, but again, we didn’t want to delay anything further and risk not treating if there’s an actual infection.
The next morning, we learned that the NICU has different levels of care team, which our boys were assigned the lowest level of care – meaning, outpatient pediatric nurse practitioners and pediatricians were coming on to treat them when they’re on service. We saw neonatalogists rounding on the other babies in the NICU and we wanted that level of care for our babies.
TIME FOR A CHANGE
We felt like a change was needed and that we should escalate our babies’ care to a higher care team. We spoke to the day time nurse practitioner. We explained to her that while we appreciated all of their efforts, it’s been weeks of the same dialogues, same outcomes, and no progress. Luckily, the medical team understood our frustration and agreed. The next morning, we were greeted by our babies’ new neonatalogist and his team. The first thing he said was that he felt like a lot of unnecessary medical intervention occurred the other night which he didn’t agree with. He also felt that the UTI results could’ve been contaminated, and like us, didn’t want to risk not treating in case it was a real positive. So we agreed to give the boys antibiotics prophylatically. He was also not as concerned with the babies’ desaturation levels. While the old care team were worried about their desaturation levels hitting the mid 80s, this new doctor said he would only be concerned if the levels dipped to the 60s.
We then asked what are the criteria for discharge. He said he wanted to see weight gain and their ability to finish their feedings so that we can remove the NG tubes. For the desaturation, he wasn’t too concerned since he said babies at home could be experiencing them as well but they just don’t have a monitor attached to them to alert the parents. We felt very hopeful with this new team. So they started the antibiotics while we waited for the cultures to grow to see if the correct antibiotics are being used.
We also noticed that the NICU nurses were assigned 3 babies per shift and each baby was only given 30 minutes for diaper change, vitals, and feeding. Our babies took at least 30 minutes to finish a full feeding. So we started arriving for their 9am feeding, stayed for their 12 and 3pm feedings, and E came back for their 9pm feedings. We fed them ourselves so that we could focus on having them finish their feedings for weight gain and work on feeding without the NG tube. Sure enough, after a couple of days, they started finishing most of their feedings and gaining weight consistently, and we were able to persuade the care team to remove the boys’ NG tubes. Both babies were still experiencing desaturation, but again, the doctor wasn’t concerned. Then the doctor gave us the good news that they can be discharged in three days if everything stayed stable. We were so happy.
DISCHARGE TIME!
Everything stayed stable and we finally got the okay to discharge! On the day of discharge, we put on their going away outfit which was a short sleeve, pantless onesies. The nurses were like, “That’s it?” We were confused. I guess, we should’ve brought a full on onesies haha! We put them in their carseats and for the first time as a family of four, we walked out of the hospital together. Little did we know, the journey was just beginning!