Love the Unexpected

First, let me acknowledge that the doctors and nurses in the NICU provide exceptional care. Some of our best interactions while in the hospital were with the staff in this unit. It’s a necessary stepping stone for many babies and it was absolutely the right place for Baby A. At first.

But after a few days, we realized our stay was going to be longer than we anticipated. There were times that I remember feeling like we would never get our baby home and in hindsight there are a few things that I wish I had been better prepared for.

If you haven’t had a chance to read our cleft lip and palate diagnosis or birth story, those articles might be a helpful place to start to lend some context. But in short, in October of 2022, we welcomed our twins into the world, a boy and a girl, with our baby boy being born with a cleft lip and palate.

Our NICU Story

Thanks to the meeting we’d had antenatally with our cleft lip and palate clinic, we’d been forewarned to expect a NICU stay for Baby A. We’d also known that with a twin pregnancy, we might see Baby B sent there for a short stay. Having that knowledge beforehand was a huge gift, because it helped my husband and I set our expectations following the delivery.

Thankfully, I had made it to thirty-six weeks and both babies were born well over five pounds which were the magic numbers for avoiding an automatic referral for our baby girl. Since she was doing great, we were able to keep her with us throughout our stay.

As expected, immediately after delivery, Baby A was sent to the NICU. He was healthy but the main concern with all cleft babies, especially as newborns, is ensuring that they’re able to get the nourishment they need. We’d known that breastfeeding wouldn’t be an option for him, as babies with a cleft palate are usually unable to generate the necessary suction.

The first concern for the NICU when baby arrived was to make sure he got his first feed. For this, they inserted an Nasogastric (NG) feeding tube. Just as it sounds, the tube is inserted through the nose, down baby’s throat to his stomach. Formula can then be administered by connecting a syringe and either gravity feeding (i.e., keeping it elevated to let the liquid run through at a slow pace) or using a pump (this automatically dispenses the syringe at a set speed).

Later they tried him with a bottle and he took to it immediately, which my husband and I saw as a great sign. After he pulled his NG tube out a couple of times, they let him bottle feed without it to see how he would do. He did great.

During this time, I was still in the hospital recovering with Baby A. I had lost a lot of blood during the delivery and we realized later that they had missed taking my bloodwork immediately after. The protocol post-C-section is to get you up and walking as soon as possible. The first attempt, I was accompanied by a nurse and made it just outside my hospital room door, before getting too light-headed and going back to bed.

The second attempt, the nurse told me that I should get up and get myself cleaned up in the bathroom. Well, I remember thinking, I guess that’s what I should be capable of doing. So, I got up out of bed unassisted and walked to the bathroom. My husband asked if I needed help. “No,” I said, “I’ll be okay.” He followed me in anyway.

It was a good thing, because I then lost consciousness and he caught me before I hit the ground. After that incident, they took my blood, realized my hemoglobin was low and hooked me up with a blood transfusion stat.

Although not ideal, I was thankful for the extra days that I was able to stay in the hospital because it meant I could go to the NICU and visit Baby A. I wasn’t able to sit for very long, but I cherished every snuggle with him. There was also a complication with getting Baby B to visit with me, so unfortunately the twins were separated during this time.

The first time I watched my baby boy eat was also the first time that I really got to see the full severity of the cleft. I will admit to being a bit overwhelmed. There was a little piece of me that had hoped that maybe the technicians had mis-measured during the ultrasound and it wouldn’t be as bad as they thought. The truth was, it was exactly what they’d told us it would be and seeing it for the first time made it really hit home that we had a long road ahead of us.

Both babies continued to do well and Baby A continued to eat from his bottle, not needing the NG tube. However, the day before I was discharged, my husband came in with some bad news. Baby A had developed sores on his palate. Until they cleared, he would need to go back to being fed exclusively through the NG tube. The NICU wanted to keep him until they could see that the sores had healed and he could go back to bottle feeding.

That made my discharge day really hard. I was feeling better but not great and starting to experience nerve pain that I hadn’t had before. I went to say goodbye to my little guy and give him one more snuggle. My husband and baby girl went home in one car with my mom. My sister and dad drove me home in a vehicle that was easier to get in and out of. Even so, I barely made it out of the car when we got there.

Once home, I made it up the stairs to our bedroom but couldn’t get into bed. The rocker-recliner had been my friend in the weeks leading up to delivery and there I would stay. Due to the issues I was having with my mobility and the distance we needed to drive, I wasn’t able to return to the hospital for the rest of that first week.

My mom and sister came and helped with Baby B, while my husband drove in to the city each day to visit Baby A. Everyday, I hoped for news that he was doing better and getting closer to coming home. But, we just kept hearing more of the same.

Toward the end of that week, the conversation started shifting. It was becoming clear that while the sores were healing, it was going very slowly and he still wasn’t back on the bottle.

The NICU doctors started talking about getting the cleft lip and palate clinic in to take a look at him, to see if there was anything they could do to help with the feeding. They suggested lip taping or even moving up the surgery date.

All of a sudden, getting him home didn’t seem to be just about getting him eating from the bottle. They were very reluctant to send him home on an NG tube, and I’ll admit that was something I was also hoping to avoid. I didn’t know the first thing about how to manage it and I found the prospect intimidating.

They started to talk about the possibility of transferring him to another hospital with the hope of the cleft lip and palate clinic providing more help to him. At this point, my husband and I were trusting that they knew what they were doing and were open to the transfer if it would mean making progress on getting him home.

The day of the transfer was also the day I said enough was enough and I was going to the hospital to see my baby. It had been a full week and while I still wasn’t able to sleep in my bed, I was getting in that car one way or another.

We went straight to the new hospital where our son was being sent, taking Baby B along with us. After an unfortunate mishap that delayed the transfer several hours (and did not instill confidence in me), I finally got to see my baby again.

I distinctly remember the look in his eyes nearly breaking my heart. He hadn’t made a sound the whole time and he looked so forlorn. I picked him up, navigating all the wires from the monitors, and hugged him tight. He snuggled right in and over the course of that visit, he started to perk up.

The next day we went in to the news that he had been given the go-ahead to try bottle feeding again. My husband had done several feedings with him during the first few days and was excited to try again. Baby boy downed the whole thing.

Leaving the hospital that day, I was starting to feel a bit discouraged. Despite the reintroduction of the bottle, it didn’t seem like we were any closer to bringing him home. Throughout the course of the day, we hadn’t seen a doctor or heard anything about a plan to do so. All that our nurse had mentioned that he was doing so well, he really didn’t need to be in the NICU.

We woke up the next morning and got ready to head down to the hospital, as was becoming our routine. As I got the coffee ready, my husband got a phone call. It was the nurse from the hospital, explaining that they were working on yet another transfer for Baby A to the pediatric unit of another hospital.

It’s a good thing they called my husband. It’s also a good thing he’s a very patient man.

Overhearing the conversation, I immediately protested. After the first transfer, I knew another would only delay getting our baby home further. I had seen firsthand that it took a couple of days to do the move and have the new team get familiar with our case.

My husband calmly explained to the nurse that we were eager to get our baby home and were willing to do whatever was necessary to do so, even if that meant learning how to manage the NG tube. That was the only thing keeping him in the hospital at this point.

The nurse was very understanding and proceeded to ask us when we’d be arriving to the hospital for the day. She said that she’d try to get someone up from the cleft lip and palate clinic to meet us and that they wouldn’t do anything until we’d arrived and had a chance to talk over our options.

I was pretty upset on the way into the hospital that day. I was angry at the doctors and honestly a bit angry at God. We had been through so much in the previous weeks and months and I couldn’t help asking, “Why us”? Why was it that so many women seemed to experience easy pregnancies, deliveries and recoveries and yet mine had been such a struggle?

There were babies born every day without deformities or stays in the NICU. Why had God let this happen to us? And why wasn’t he helping us get our baby home? It felt like I was praying and every request was falling on deaf ears. In fact, it seemed like it was making things worse. Maybe if I stopped altogether things would get better.

As we drove, I remember taking my anger out at God in prayer, asking these questions. But the verse that kept popping into my head was the same one that had cropped up numerous times before.

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

Proverbs 3:5-6

In my heart, I could hear God asking, “Do you trust me?”

Did I? I thought I did. I’d been trying to since we first found out about the twins, the cleft, the diabetes, the infection, the c-section and even throughout the NICU stay. It all seemed like so much. It was starting to feel like more than I could take and that God was asking too much of me.

But I looked out my window at that big prairie sky and I remembered that God had created this whole world. He was the maker of the heavens and the earth. He saw a million details that I didn’t. Maybe it felt like he wasn’t answering my prayers – but he was. We’d already seen so many answers.

Our babies had been born alive. They’d been born healthy and strong. I was recovering well, despite the challenges I’d had pre- and post-delivery. We’d had time to adjust to caring for one baby before adding a second. My baby was being given excellent care when I couldn’t be there. I’d had time to recover enough to be able to provide better care for my babies when they were finally both home.

Maybe things hadn’t happened how I would have chosen, but every trial was preparing me to be the mom my babies needed me to be. So, I answered God. Yes, I did trust him. He’d carried us this far and even though I didn’t understand everything that was happening, I knew I needed to surrender this circumstance into his hands. In that surrender, I felt a sense of peace going into the hospital. It was a somewhat resigned peace, but peace nonetheless.

When we arrived at the hospital, we were greeted by our nurse and the coordinator from the cleft lip and palate clinic. Though I was admittedly still disgruntled, she put me at ease and helped to explain the situation. In a nutshell, none of the things the previous NICU had thought the clinic would do were options at the time. Many cleft babies went home with NG tubes and if we wanted to get him home, that would be our best bet.

After the meeting with the coordinator, we finally spoke with a doctor. Realizing that we didn’t want to be transferred to a pediatric unit and were willing to be trained on the NG tube, they helped us create a plan to be referred to Home Care for our supplies and receive training from the nurses on how to insert and maintain the tube. Once we could show that we could insert the tube on our own three times, we could bring him home.

We couldn’t start the training until the next day but I felt an enormous sense of relief that we had a plan and a timeline. Finally, we were getting somewhere. We went in the next day and received our first set of supplies and training from Home Care. We were successful in getting the NG tube inserted twice. This is a pretty unpleasant experience for baby, so we held off on a third attempt until the next day.

Then, finally, sixteen days after his admission into the NICU, we got the third NG tube attempt in and were approved to be sent home. It was the best day ever. What a change from where we had been just a few days earlier. We packed up baby boy and baby girl in their car seat and drove home for the first time as a family of four.

Our Lessons Learned

As I mentioned earlier, we did have a head’s up to expect a stay in the NICU, which was a huge blessing. We’d also had the benefit of attending a twins and triplets panel with other parents of multiples who shared their experience and gave advice that proved very helpful to us. With that in mind, here are a few lessons we learned after our NICU stay.

1. It’s okay to let the professionals take care of your baby

This was a piece of advice that we received from several couples in the twins and triplets panel. It’s really hard to leave your baby, especially your newborn baby in someone else’s. Every part of me wanted to stay with my baby boy and be the one to take care of him. In our case, I couldn’t physically do that and we still had a second baby that also needed our attention. Rest assured that if you are facing a NICU stay, your baby is in good hands. It’ll be exhausting when baby does finally come home, so take advantage of the time to rest up and get ready, rather than wearing yourself out.

2. It’s okay to ask questions

Looking back, I wish I would have asked more questions, especially when it came to the transfers. We likely could have avoided any transfers at all and gotten home sooner if we had only had a better understanding of what the cleft lip and palate clinic would or wouldn’t do and pushed harder to bring him home on the NG tube.

3. This really is only temporary

In the middle of it, it feels like a trial that is going to last forever. In the grand scheme of things, ours was really not that long of a stay and yet it felt like an eternity. But one day, you’re going to be discharged and will bring that baby home. You’ll get to hold them without any wires or monitors, and put them down in their own bed. You’ll get to catch up on all the cuddles you missed and make sure they know how much you love them. Gradually, what seemed like such an enormous mountain to climb, will fade into memories. It may be hard in the moment, but it won’t last forever.