6:00 am Sunday, November 18, 2012: I'm peeing in the bed!!! Oh, wait... My water broke! No contractions yet, so we are told to just hang out at home until it's time to go in to the hospital. We are so excited, we can't contain ourselves! So, we call John's family and they hit the road as soon as they can. My mom has been on vacation in Colorado for all of 12 hours, so we call her to catch the next plane home. We clean the entire house in preparation for their and baby girl's arrival. I paint her changing table. I bounce on an exercise ball. We go for a walk. We try to nap. Still no contractions. So, we have to go on to the hospital, since it's been more than 12 hours since my water broke. After a quick stop at Kroger on the way to grab some snacks and a pretty scarf, we are on our way to have a baby!
We get checked in and they load me up with Pitocin in hopes of getting me going so I can still have the water birth I desire.
It hurts so bad! We've passed the time frame allowed to get into the tub, so I request an epidural. Ain't puttin' up with that Pitocin pain for any longer. We finally sleep.
9:45 am Monday, November 19: I'm awakened by the feeling that I'm holding something back... We call in our midwife, who made it to the hospital just in time for the big moment. It's time to push!
10:28 am: Layna Marie Leland enters the world! She is 6 pounds, 9 ounces and 19 inches long! As the midwife lays her on my belly, she looks kind of blue and floppy... the nurse to my left says in a low voice, "ookaay," and whisks her away for the next 45 minutes. I need just a few stitches, but it shouldn't take this long, right? Where is my baby? We are supposed to be breastfeeding and bonding! We only get 2 hours in this room following birth! Everyone is walking back and forth, in and out of the room. The midwife has another mom to tend to. She says, "congratulations," and gives me the saddest hug I could ever imagine in a labor and delivery room that has a living baby in it. I'm so confused, but I blame it on the meds. The nurse finally hands me my perfect little angel. John looks at her, then at me and and asks, "Do you think she has Down Syndrome?"
"No! She's perfect. Look at her!" And she was perfect. We try to get her to latch onto the breast, but it doesn't work so well. It feels like a minute and it's time to move to our recovery room. I lay her in the clear bassinet and load myself into the wheel chair, and we head out to begin our new life as parents.
Our families are waiting for us in the hallway. They are mesmerized by the tiny little human staring back at them. Wanting to join in, I exclaim, "She has no eyebrows!" I think this is completely adorable and perfect for our newborn, but, I guess that is my ticket out of the hallway and into the recovery room faster than you can say, "WAIT!" So, I sit with my back to the door with the nurse who wheeled me in there, staring. It is awkward to say the least. Finally, John enters the room to say he is going with Layna to the nursery. I'm settled into my bed and we had agreed beforehand that she would not leave his sight for a while, so I bid him farewell. He's not gone too long and returns without her. They will bring her in just a little bit. We wait for what seems like ages until the pediatrician comes in.
He keeps it short. "We think your child might have Down Syndrome. She has many of the physical features that we look for. We have sent tests out for verification." He waits for a response. I whip my head around to give John the look of, "how did you know?" and all I can muster is a soft, "Okay." He looks us in the eyes, half-bows, whispers, "I'm sorry," and ducks out of the room.
My face is on fire. My head is swirling. The room feels like it's in a lava lamp, all goopy and moving all around itself. John joins me in my bed and we cling to each other, staring at the wall. I can't even muster one tear, I'm so stunned. He finds the strength to let some fall. We begin the many hours to come of wondering how it could be, what this means for her and our family, what her life will look like, if she will even be able to DO anything...
My phone keeps buzzing... We have family members who need to leave soon, but we have no baby for them to meet. Where is she? John tells me when they took Layna to the nursery, they went straight to the NICU, instead of the regular nursery. I don't understand why, but at this point, I don't really care as long as I get to hold her soon. It's been well over an hour since we moved into this new room and I am just so ready to hold my baby. Down Syndrome or not, she is my child and I want to hug her and tell her how much I love her.
FINALLY, a NICU nurse wheels Layna into our room. She tells us that our little girl has fairly severe jaundice and an infection of some sort, so she will need to remain under the watchful eye of the NICU. We will be able to care for her just about as much as we are able to, though. We call in our family.
My heart is racing. My hands are clammy. I tremble as I hand Layna to my aunt. She moves from aunts and uncles to cousins to grandparents to friends. Nobody even looks twice. Today, we can just love our baby and work on our own grief as we heal. Everyone else can wait until another day to hear the news.
Parenthood hits us hard. Her lack of tone makes breastfeeding nearly impossible. It is frustrating and heart-breaking. Lactation consultants come and go, with only slight progress. I'm having to pump and feed her with the bottle, which I'm ok with. I just want her to get that liquid gold! We sleep when we can, but between all the nurses coming in constantly and our own racing minds, rest evades us.
While we're busy not sleeping, we are falling head over heals in love with this tiny little human we made. She is perfect! We love taking care of her. The NICU nurses keep telling us that we should take advantage of their care more frequently so we can rest, but we just can't send her away. We are so excited to be parents!
She has to spend hours every day as a little glowworm, underneath a lighted blanket that helps with her jaundice. We just stand over her bassinet, oohing and ahhing. The first time she poops in our care is under one of these blankets. It scares us! We think something has exploded...turns out it is just the diaper! Hah!
A couple of days go by and we are getting more comfortable in our new role as parents and feeling more confident in our little family. Now that we have seen that our little girl is just a baby after all; that she just needs love and care like any other newborn; and that the world did not, in fact, crumble all around us due to a potential diagnosis, we feel more secure. We stare at her and go back and forth saying, "she looks like she has it right now..." and then, "I don't think she has it..." Until we hear the results of her Karyotype tests from the doctor, we can only speculate.
Wednesday, November 21: Now that we are feeling better, we start craving food other than what is served at the hospital. John and I decide that it will be good for everyone if he gets out for a bit to get some fresh air and fast food. I assure him I will be fine.
15 minutes later, the phone rings. It's the pediatrician and he has the results. It is positive for Trisomy 21. Our baby girl has Down Syndrome.
I repeat it back to him, just to make sure I heard correctly. I ask him if he's sure. He is, so I say, "thank you" and hang up. I hold my baby and crumble. Now that there is no possibility that she does not have the diagnosis, it becomes real. Until that moment, I had survived on the hope that the result would be negative and we could just carry on our "normal" life and laugh about all that crazy worrying later down the road. That will never be my reality, now. I have not cried this hard in many, many years. The sobs fall uncontrollably and heavily. I have to focus on not dropping Layna because I'm crying so hard that I'm losing muscle control in my arms and legs. There's a knock at the door.
Gail. My saving grace. Just the person I need at that very moment, since my counterpart is away and oblivious to the events taking place in his absence. She asks if I am ok and I tell her about the call I had just received. She hugs me for real. The kind of hug that releases all the tension in your body, even if just for a fleeting moment. I blubber all of my fears to her and she doesn't really know what to say. But, she tells me that Layna is a baby first, our daughter first, before any diagnosis. She tells me that the Lord put her in our lives for a reason and we are going to give her a wonderful life. She promises to bring me some pamphlets of information to help ease some of the concerns in the forefront of my mind. John returns with delicious-smelling food, but it just makes me feel nauseous and I no longer have an appetite. He looks surprised and concerned as he notices my red, puffy face all raw from sobbing. I break the news to him. He nods in understanding, not nearly as shocked as I.
We hold each other for a while. Tonight, I feel completely deflated; like I've been run over by a truck. I need sleep. Layna will stay in the NICU tonight.
November 22: Today is Thanksgiving! We have so very much to be thankful for this year. We made a human! And she is perfect and we love her more than life itself. So, yeah, we're pretty thankful. We learn that Layna has a tiny hole in her heart called a VSD. A pediatric cardiologist will be able to tell us how serious it is, but it doesn't appear to be too much of a threat at this point.
Elaine, the NICU nurse arrives at our door with our beautiful little bundle. She can't stop GUSHING about our child! She tells us we must be special people to have been given such a wonderful blessing. She believes God must have big plans for us and has 100% faith that we are the perfect parents to raise her. She hands over some folders and pamphlets of information regarding Down Syndrome and options available to us as far as early intervention. All we need is a car seat test and we can hopefully go home!
It takes TWO HOURS! Yeesh! It feels like forever, but, we head out and make it just in time for Thanksgiving dinner. The whole family is waiting to welcome Layna. What a special evening! Good food, time with those we love and, best of all, our sweet little girl is there to join us.
Once everything is tidied up and just our immediate families remain, we gather everyone around and tell them that Layna has Trisomy 21. I promise myself I won't cry, but I do any way. We tell them that we are grieving the typical child we lost and that they should feel no guilt or shame in feeling sad. But, that we aren't sorry about her diagnosis and that we even feel honored that God would entrust us with such a special child. Someone prays over us and Layna and we part ways to absorb the shock in our own ways. Everyone is so supportive. They have all fallen in love with her, too, and know deep down that nothing will shake that love.
That love only continues to grow exponentially as Layna shows us her spunky, sweet, sassy, loving personality. She has proven over and over again that she is capable of accomplishing everything a typical child can, even if it's in her own time. Two years ago, I never could have imagined how much we don't focus on the fact that she has Down Syndrome. Just like in those first few days, she is our daughter first who just needs love and guidance, like any other child. Sure, we do life a little differently than most, but we wouldn't change it for anything.
What joy our sweet little girl has brought to our lives! We are so happy and proud to be her parents. We love our little Layna Bug!
