Continued from Part I

Not long after Eline’s birth, Kathy began to have some concern over getting the placenta delivered. In fact, she asked Jon to pray as she worked. I did eventually deliver the placenta, but she and Gaylea both said they had never seen one in such poor shape.

Probably as a result of a badly degraded placenta, I ended up developing bleeding issues and severe cramping. Kathy administered several medications but felt that a hospital transfer was needed. The next couple hours were incredibly chaotic, and I was in excruciating pain. Jon called the ambulance, which arrived within minutes, and I was taken to the hospital where Corin had been born. Jon put Lina in her car seat and followed in the Jeep. Once I arrived at the hospital, they asked a lot of questions and got me admitted and prepped for a D&C. At that point, I just wanted them to knock me out and get things taken care of. I could concentrate on very little besides the immediate pain.

I got to see Jon and Lina for just a moment before they wheeled me into the OR for the D&C. Then… blessed relief, and waking in recovery feeling much, much better. After a half-hour or so, I was wheeled back to my hospital room. At some point, a nurse must have told me Jon had taken Lina to our pediatrician for evaluation. The information sank slowly into my still-foggy brain. As I lay quietly in the bed in the hospital room, exhausted and alone, things that had been lying dormant slowly began to register. Why had Jon taken our baby, who passed her post-natal evaluation with flying colors, to the pediatrician? I pictured her tiny face, and suddenly I was terrified. There in that hospital room, I was facing the realization that Lina had features that looked very much like Down syndrome.

I hadn’t been alone very long before our midwife Kathy arrived. She asked how I was feeling, and then I asked about the baby. Was she okay? Kathy said yes, she was fine, that Jon had taken her to our pediatrician for evaluation rather than having her admitted there at the hospital. I asked again: “But she’s okay?” Unspoken fears hung in the air. Kathy came around close to the side of my bed and gently asked, “You and Jon did not have time to talk about a potential chromosome issue, did you?” I said, “No…but I wondered.” Those fears no longer hung suspended in the air; now their full weight settled on me. I think I choked out, “Oh, Kathy,” and broke into sobs. Kathy hugged me close and said, “I know. I know.”

Things are a bit hazy after that. I remember telling Kathy that it didn’t seem fair, after all we’d been through just to get pregnant. I wondered if Jon had said anything to either set of parents. What was the doctor saying? In the chaos of the transfer to the hospital, I had not thought to bring my cell phone (or shoes, or anything except the gown they cut off me when I arrived). Thankfully, Jon had Kathy’s phone number, so he was able to call her and talk to me. He was still at the pediatrician’s office, and he was clearly overwhelmed. The pediatrician was fairly certain of a Down syndrome diagnosis and wanted Eline admitted to the hospital for better evaluation and observation. Jon was worried about her being separated from me for so long. I knew the hospital where I would be staying overnight was probably not the right place for the expertise we needed, though, so we ended up agreeing that we wanted her to go to Vanderbilt Children’s.

To make an incredibly long story a tad bit shorter, Jon spent six hours at the pediatrician’s office while they tried to sort out how to get our baby transferred from there to Vanderbilt. Usually, a transfer of this sort would happen from one hospital to another, and it apparently required quite a bit of extra processing for the Vandy NICU –on-wheels to make the trip to a pediatrician’s office. Frankly, Jon threw that doctor’s office into chaos when he showed up with our hours-old infant. No one really knew what to make of us and our confluence of unusual circumstances. We owe a huge debt of gratitude to our doula, Gaylea, who went to be with Jon at the doctor’s office and stayed with him through that entire ordeal, all after having attended back-to-back births and with groceries spoiling in her car.

Vanderbilt’s Angel One NICU transport finally arrived late that evening, and Jon took the ride with Lina and arrived at the hospital around 10:30 p.m. Lina was admitted to the NICU, and Jon spent the night there with her.

Sweet friends came to my hospital room to offer support and to bring dinner and a few necessities from home. Jon had avoided telling our parents about Lina’s likely diagnosis until he had been able to talk to me, but by evening, he had made the calls and my parents headed to the hospital to offer their support. Jon’s parents live about three hours away and made plans to leave as soon as possible the following day.

I spent a lonely night in the hospital with IVs running antibiotics and two units of blood. I was released in the morning around 10:30, and my mom was there to pick me up and drive me straight to the Vanderbilt NICU.

Vanderbilt’s NICU team was able to begin answering some of our big questions very quickly. The diagnosis of Down syndrome was certain. A chromosome karyotype run a few days later would confirm that Lina had the most common form of trisomy 21 – three copies of the 21^st chromosome in every cell of her body. The medical team ran diagnostic tests and immediately ruled out several very serious health conditions that are common with Down syndrome. We are incredibly grateful that Lina’s heart and all other major organs are perfectly healthy.

The one remaining issue, which would keep us in the NICU for eight days, was making sure Lina was able to feed well enough to get the nutrition she needed. Because of smaller mouths and lower muscle tone, feeding challenges are common for newborns with Down syndrome. Lina ended up with a feeding tube for a few days to help her get the volume she needed to build her strength. I stayed with her to nurse and pump on a three-hour schedule around the clock. Jon was able to make periodic trips home to be with Corin, who was enjoying time with Jon’s parents – Mimi and Grandpa – but was also clearly struggling with the very uncertain state of affairs.

I will say this: I have a new respect for any parents who have endured a NICU stay. It is not an easy experience, and I honestly have no idea how parents of preemies survive those months-long stays before they are able to bring their little ones home. I struggled with feeling terribly isolated in that NICU room, even with frequent visits from family and friends. The steady cafeteria and restaurant fare did a number on my digestive system, sleep was almost non-existent, and worst of all, I desperately missed my sweet boy. Jon’s parents brought Corin out to the hospital several times so I could see him, and saying good-bye left me in tears every time. Children under four were not allowed in the NICU, so Corin wasn’t able to meet Baby Sister until we brought her home.

Oddly enough, the feeding issues we have faced with Lina are ridiculously familiar. In fact, Lina has been a better eater than Corin was in his first few weeks of life. We were grateful the NICU staff worked with us to make sure she was getting enough to eat, but by the end of our stay, we were beginning to feel like getting her home was going to require a jail break. I started joking about having checked into Hotel California.

Eline was released from the NICU late in the day on Friday, September 21. The discharge process was painstaking, but we finally walked up our own stairs just in time for dinner, and Corin finally laid eyes on the phantom Baby Sister we’d been talking about for so long. (He promptly attempted to poke her in the face. Things have improved from there, although there was also the “accidentally beaning in the head with a toy truck” incident. Overall, he has been curious and very gentle.)

I cannot tell you what a relief it has been to be home. Jon’s parents were able to stay with us through the weekend, and then we were on our own: our family of four. We are terribly sleep-deprived, but so thankful to be settling into a more normal routine. It is so sweet to change diapers and snuggle our newborn without tangling wires and setting off sensor alarms. Corin is definitely still adjusting to the major changes in our lives, but he has settled down a lot over the past few days. Our fantastic circle of friends and family has organized a meal rotation to provide us with dinners for a MONTH. How amazing is that?! I am finding satisfaction in resuming the mundane tasks of laundry and housekeeping, although I admittedly cannot even begin to keep up with all the things I’d like to get done.

Of course, I know the bigger question on everyone’s mind is: How are we feeling about all this? How are we coping? The answer deserves its own post. Bear with me as I try to snatch a few more free moments in the coming days to share our continuing journey. {Follow-up post here.} For now, I will say that God is good. Even when I cannot find the words, or perhaps even the faith, to ask for what I need, He is here. I am certain today, as I was 16 days ago, that our family is safe in His care.