Today we are so honored to introduce Kacy Bear Carpenter Dominguez, a Love Child reader who reached out with the story of her son, Theo. Theo was born at 24 weeks and at one pound and 6 ounces. Kacy spent 3 1/2 weeks on bedrest prior to delivering her son. She felt compelled to share her story. We’ve all heard stories from our friends in the NICU, usually after their home. They share the good, the victories, the high moments but rarely do they share the lows. And we get it. They’ve lived it once and rarely do they want to look back on those frightening days. But Kacy took us back to those early days in bed rest and how difficult it was, what it was like hearing the other accounts of nearby families some with good news other with not so good news, and all the emotions that came with the difficulty of producing enough breastmilk for her growing newborn. It’s important that we see and hear this side too. But Like Meghan Bevill, who shared the story of her son George born at 32 weeks earlier this month, Kacy also sees the silver lining of the NICU. The beautiful and tiny victories that all NICU parents understand. As we wrap up our coverage of NICU Awareness Month with Theo’s story, we realize NICU awareness should not be confined to one month. Continue to reach out and share your stories. We welcome any submissions at firstname.lastname@example.org
by Kacy Bear Carpenter Dominguez
Prior to delivery at 24 weeks, you spent 3 1/2 weeks on bedrest. Were there red flags leading up to this moment?
Looking back after this experience and with Theo being my first pregnancy, I realize now there were a few red flags that i was unaware of at the time. There were no initial concerns during my appointments at the birth center so when 20 weeks came along, we were excited for another routine visit and to see our baby, hear the heartbeat, and find out the sex. We were gleefully unaware of all the worrisome things that were seen at that appointment. The day after the sonogram, my midwife called and said that a couple red flags had popped up. They saw a couple common precursors for downs syndrome. She wanted me to go see a specialist where I would get a more detailed sonogram and some blood tests done, and hopefully rule out some things. At that appointment, the doctor determined the blood tests were good, and baby seemed to be doing well. The doctor said she saw a blood clot in my placenta, which can be totally normal and she wasn’t’t worried. She felt that some of his measurements were falling short because we had perhaps gotten the due date wrong, therefore she changed my due date to two weeks later than we originally calculated. We felt cautiously optimistic when we left and scheduled a follow up. Shortly thereafter, I had 2 separate incidences where I woke up in the middle of the night bleeding and cramping. The second time it happened I went into the ER to find out I was experiencing a placental abruption. A placental abruption is a condition in which the placenta detaches from the uterus. As it happened, I would experience bleeding and cramping, and Theo would experience stress and lack of oxygen. I would have to remain in the hospital for the next 3 1/2 weeks to monitor him and try our hardest to keep him cooking for as long as possible!
What was being on bed rest like for you?
Bed rest was incredibly difficult. Mine was so sudden and intense. One moment I was going to the ER, hoping I’d get checked out and go home, and the next moment I was being admitted for an unforeseeable amount of time. They wouldn’t’t let me walk. I could barely shower. I even had to let them know when I needed to use the restroom. I was being monitored 100% of the time in case Theo’s heart rate went down and didn’t come back up. My first day was full of facts, heavy decisions, and a million moments of my husband and I looking at each other wondering how we ended up here. Then about 8 days into bed rest, my new insurance company informed us that the hospital I was at was not under their umbrella and as soon as I was stable, I would need to be transferred. We were devastated and terrified. About four days after that I was stable and transferred. I had to take an ambulance ride to Seton Main and quickly adjust to a new set of doctors and a new plan. While that was such a tough transition in an already tough time, it needed up being a blessing in disguise.
In this position, you do all you can to stay calm and keep your mind busy. There was a lot of meditation, Netflix, chatting with nurses and doctors, and keeping our time in there as upbeat as we could. They continued to emphasize the importance of keeping your stress levels as low as possible (which feels impossible), but is highly motivating when that’s about all you can try to control in the current situation. So, you do your best.
What was a typical day spent in the NICU?
We had 93 days of NICU time and none of it was very typical. Most days were different. Like many others will tell you, it was TRULY a roller coaster. In the grand scheme of things we had a relatively easygoing NICU stay, but an easygoing NICU stay is still an incredibly tough one! A good day there was a boring day. I would go and hold him, I could change his diaper, and give him and occasional bath. I would do kangaroo care for hours and chat with nurses. Then some days involved tests and waiting for results, watching the monitors for his heart rate and oxygen levels and feeling anxious as those number fluctuated. Each day was something new. Testing him out with less breathing support to see if he could do it on his own, trying to feed him more, watching to see if he could recover on his own after a heart rate drop, or if we needed to give his back a little rub to remind him to breath on his own. Remember, I was still supposed to be breathing for him. It was a lot!
Could you hold and/or breastfeed your baby while in the NICU?
The first time I held Theo was when he was 4 days old. I didn’t think I was going to be able to hold him yet when our nurse casually asked, “Do you want to hold him?” Of course I did! Excitement and nervousness rushed through me. I talked to enough people and read enough articles at this point to learn about the importance of Kangaroo care ( skin to skin). I was ready! Between bed rest, and a long NICU stay ahead of us, this and giving him breast milk felt like the 2 things I could finally do to help, to feel some control. So I sat in a hospital recliner and she gently picked Theo up, tubes attached, and tucked him into my bra, against my chest. Everything up to this point had been so traumatic, I was recovering from an emergency c section, the day after he was born was Mother’s Day and I wasn’t’t stable enough to see him yet, and then he was just in this bed and I could barely touch him. This moment with him on my chest felt so real, felt maternal, and I felt truly complete. His itty bitty hand would lay over heart and it filled right up. I spent the next 93 days holding him as much as possible. Each time felt more comfortable, and eventually there were less and less tubes restricting us, bringing us closer each time.
Just a few short hours after having my son, I woke up in my hospital room to a lactation consultant at my bedside. I had the impression that because he was so early, it would be highly unlikely I could even produce breast milk. At this point Theo was too small and underdeveloped to be able to breastfeed yet. So she showed me the pump, and low and behold I was producing the littlest amount of milk. I immediately became very excited and motivated. I thought I will just pump and pump and provide him with whatever I could to help him grow stronger. Again, just grasping on to anything I thought I could control. I feverishly pumped and pumped, and he began eating more and more. Yet my supply was not going up with Theo’s appetite. It felt like so much pressure. I was pleased he was tolerating more and more milk, but I found myself obsessing over every drop of liquid gold I could possibly get, and my supply was going down. It was mentally exhausting. I felt like my body was failing me in so many ways. Walking into the NICU with my measly 1/2 oz. of milk felt shameful. Nobody made me feel this way, it was my own personal feeling. Finally one day, one of our many fabulous nurses said ” Honey, I think your done and it’s OK. ” It was just one those situations where it felt like she gave me permission and I needed that. It still hurt to give it up, but it was also a bit of a relief. At that point I had given him the best of what I had, and he was still small enough to qualify for donor milk, which I am eternally grateful for!
How were you best supported? How can readers support their friends?
Support, my number one silver lining. The many different ways we received support were so unbelievably moving.
My personal, number one pillar of strength and support was my husband. He held my hand every step of the way and was my/our advocate when I couldn’t be one for myself. He slept every night of those 3 1/2 weeks in an uncomfortable chair next to my bed.He pulled himself together and took care of business for his family at a time we were feeling so broken. Theo and I were so lucky!
We are both so lucky to have amazing families who helped emotionally, financially, and so many other ways, helping continue our fight for Theo. They showed up, they helped us up, and kept us positive. We are also lucky to have some amazing friends, near and far, who reached out in so many ways. From sending me food, things to keep me distracted while on bed rest, visits at the hospital, and continuously checking on me. There were SO MANY people who contributed and showed love during this journey it was truly amazing. From NICU nurses ( the most amazing humans out there!!), nurses from bed rest, clients from the salon I work at, to complete strangers who heard our story and reached out because they went through this experience as well. It was beyond touching, and every single person involved contributed to the love and positive energy that got us through it.
One way that made me feel the most supported (and this may not be true for every mama) was being congratulated! I was really feeling robbed of what I wanted to be such a beautiful experience, it was nice to receive some congrats. Even though our situation was not ideal, even though we still had so much ahead of us after having him, it was so nice to still celebrate the fact that he was here!
Another way was complete compliance. There are a lot of rules, and risks when visiting a preemie, and as a family we were distressed. So complete understanding of what was not only required by the hospital, but understanding of what we needed as parents in that moment.
Beyond those things I’d say food, we spent so much time in the NICU with Theo, and this after 3 1/2 weeks of hospital food. I was so nice to not have to worry or think to hard about meals, much like ANY new parent. Every family and their needs are different so don’t be afraid to ask. Maybe it’s something as simple as watering plants, but it’s less thing for the family to worry about so they can focus on what is most important!
What did you learn from your time spent in the NICU?
There were families all around to see their preemies. Everyone was respectful of each other’s privacy, but sometimes you couldn’t’t help but hear their bad news. At the same time there were quiet celebrations for those who were finally graduating or making big progress. All of this while trying to recover from a typically traumatic delivery. You just take it one day at a time and celebrate the little victories. The amazing doctor who delivered Theo had two preemies of his own, told us not to ride the highs too high, or the lows too low. Believe it or not, there were a ton of beautiful silver linings in this roller coaster, you just have to be open to them.