In the morning, I got my beautiful Baby A, fed her and held her. It felt like it did when I had my toddler, except that this was all wrong. My sweet Baby B was in the NICU with an I.V. and breathing machine. The girls were separated for the first time in their whole existence, and it just didn’t feel right. I still didn’t really know what to expect for her, and I took little comfort in the fact that Baby A seemed to be so perfect. It just made me even more sad.
I was finally moved to a room on the Mother/Baby Unit (for some reason, they didn’t move me there the night before, so I remained on the Labor and Delivery Floor) right as my friend K came to visit. We chatted for a bit before I asked for Baby A to be brought to the nursery so I could go down to see Baby B. K wheeled me down there, and we both saw my sweet girl, her condition unchanged from the night before. I still wasn’t able to hold her. It was so surreal that I had this sweet baby who I hadn’t even been able to hold yet.
The neonatologist was going to come by her isolette and discuss B’s ultrasound results with me — her brain and kidney ultrasounds. My husband was on his way, so K left and he joined me. The neonatologist told us that her kidneys were enlarged and they would need to keep an eye on her kidney function. Because of how TTTS works and can affect each baby, Baby A had also had a kidney ultrasound, although hers seemed to be ok.
The bulk of the conversation centered around Baby B’s brain ultrasound, which showed there was an absence of white and grey matter in the frontal lobe of her brain. I don’t remember the specifics because I was so upset, but he couldn’t tell us what that meant for her life. I just cried and cried as I patted her little leg from my chair. I didn’t know if we would even leave the hospital with her. The neonatologist also said that if she wasn’t able to breathe independently by the next day, he would place her on a ventilator briefly to put surfactant in her lungs so she, hopefully, could start to breathe on her own.
We returned to the Mother/Baby room and Baby A. Visitors were in and out all day: my parents with our toddler, my nephew, stepsons with their mom and grandma, and some friends. My husband brought people down to the NICU to visit Baby B and was even able to briefly hold her, even though she was still hooked up to the machines. I started having a lot of back and incision pain and did not make it down to see her again that day. I know that she had other tests done that day, but I don’t really remember what they were.
The next morning, I waited for Dr. OB to come in and check on me before I went to see Baby B, because I didn’t want to miss seeing him and thought he would be in around 9. He came in around noon, looking much more somber than usual. He had been in the NICU for at least an hour and discussed Baby B with the neonatogist. He said that with microcephaly, we wouldn’t know what she would or would not be able to do or what her life expectancy would be. No one had mentioned life expectancy yet, and I immediately burst into tears. Dr. OB also said that he looked back at my records to see if they missed something, and he even spoke with Dr. MFM to have him do the same. He said that he didn’t see where anything was missed, but he only had Dr. MFM’s reports on which to base his information. Dr. OB said that this diagnosis was not one with which we should have been blindsided. He said that Dr. MFM was supposed to call and discuss this with me, too. I told him that Dr. MFM wouldn’t call me; I was sure of that. (He still hasn’t, almost 6 months later.) Although the nurse who cared for me the night before said that I probably would go home that day, Dr. OB said that I could stay another day if I felt like I should. Had Baby B not been in the NICU, I might have agreed to go home that day, but I didn’t want to leave. I wanted to be as close to her as possible while I could, and I was still having pretty terrible lower back pain.
The photographer came to ask if we wanted Baby A to be photographed. I refused, because it didn’t seem right to have a professional picture taken of her without her sister. Baby A had her hearing test and some additional blood work done to check on her kidneys, too. She almost did not pass the tests and needed multiple blood draws to keep an eye on her Potassium levels.
I saw Baby B that afternoon, which is where I learned that Dr. OB had been down in the NICU for so long that morning. The plan was for her to have the surfactant placed in her lungs that afternoon and hold back her feedings to make sure she was able to keep food down.
Baby A, my husband, and I spent the last night in the hospital and waited to be discharged. I finally was able to hold Baby B that morning! It was amazing! She was off the machines, and I could immediately see how tiny her head was, especially compared to Baby A’s. She seemed pretty attentive and was so cute. I cheered up a bit, seeing that she WAS able to breathe. She was also starting to take bottles, which made me relieved that she seemed to be able to eat on her own, too. We were fortunate that the NICU allowed us to bring Baby A in to be with Baby B before Baby A and I left the hospital. We took lots of pictures, and the girls seemed to fall right back into being each other’s partners. Baby B, with her I.V. taped to her arm, reached over to touch Baby A and look at her. It was amazing to see them reunited and heart-wrenching to have to leave her and go home with just one baby. There really is no feeling more bittersweet than bringing home one healthy baby but leaving another baby behind in the NICU.
Stupidly, I googled “microcephaly” that night in the bathroom. I had a very long panic attack, complete with hysterical crying. My husband came in to try to calm me down and remind me to stay off the internet. I just wanted to see if there was any information about life expectancy, because Dr. OB was the only one who ever mentioned it. It seemed that the neonatologist probably did not say anything because there are so many unknowns, but a shortened life expectancy is likely with microcephaly. The fact that I can write this now shows you that I am on some good antidepressants, but also that I believe in my baby girl. She is amazing, and I know she will surpass any and all expectations.
My husband and I celebrated our 4th wedding anniversary by visiting her while my parents watched Baby A and the toddler, then picking up Olive Garden to eat at home. I was in so much pain and had such a hard time going to the hospital every day, but I felt bad that we were only going to see her one time a day. I felt like a fraudulent mother, abandoning my sick baby to be with her healthier twin. Baby B remained in the NICU until that Saturday, although we thought she was going to be able to go home on Friday after her MRI. Her Creatinine levels were high, and the pediatric nephrologist at APHC wanted to monitor her blood to ensure that there was a downward trend. We made an appointment to bring Baby B to Orlando to see the nephrologist the following Friday so he could follow up with her.
By the time Baby B was able to come home, she was able to nurse well, she was pooping like a champ, and she was still cute and as calm as could be. She liked to snuggle, and the nurses in the NICU had taken to holding her quite often because she was so sweet and no longer hooked up to a bunch of machines. Right before leaving, we met withe the neonatologist to go over the MRI. She said the MRI confirmed that there was a loss of white and grey matter, but again, she refused to speculate about what Baby B’s future would be. We were just happy to be bringing her home, so we gathered the tiny hats and blanket made by volunteers, said our goodbyes to the kindest, most giving nurses in the NICU, and strapped our tiny baby into her carseat to head home. Finally, our sweet Baby B was reunited with her sister and officially met her brothers. Our life finally felt complete.
To read about the rest of our TTTS journey, click here.