Our little Lindie Fern Swift was born on March 4, 2017. She was born at 8:54 am at Saint Francis Hospital in Tulsa. She was 5 pounds, 11 ounces and 17.5 inches long. She was small and beautiful and looked so much like her sister as a newborn.
Shortly after she was born we were told that they suspected she had Down syndrome. (They have since confirmed DS). We were shocked and caught off guard and are still in the thick of grieving and figuring out her diagnosis.
Two days after she was born, we left the hospital a little dazed, but hopeful and grateful to be heading home (at least that is what the nurses told us we should feel, "Yes, she has Down syndrome, but at least she hasn't had to go to the NICU... you should be happy!" they said) only to return about 24 hours later via the emergency room.
Lindie then spent 35 days in the NICU due to duodenal atresia, aspiration pneumonia and jaundice. She went through two surgeries, including a gastrostomy tube placement, and finally returned home on Tuesday April 11th, her 39th day of life.
Lindie is now eight weeks old, but she feels like three week old to us. Being in the NICU was difficult. We were with her daily. She never spent a night in the NICU without someone sleeping on the couch a few feet away from where she slept. Despite our daily routine of being at her bedside, trading off nights at the hospital (you go this night Chris and I'll go next), we now feel robbed of the many weeks of missed intimacy with our girl. When we should have been cuddling and kissing her on our couch, we were holding her head and feet with hands that smelled of Isogel sanitizer while she lay in a clear box. When we should have been enjoying skin-to-skin bonding time, we were awkwardly trying to hold her without pinching any cords or causing her any pain.
Lindie's first five weeks of life comprised of a small clear bed in a dark room with monitors and cords and no more than four people at a time. It was sad. It was lonely. It was not what we had planned, but it's what happened and it was what was necessary for her to heal.
I know we are not the first parents to have a child with Down syndrome. And I know we are not the first parents to have a child spend 35 days in the NICU. (Some parents stay much longer). But those things don't negate the challenge that was her life from the beginning. Even now I am struggling to accept the joy of my daughter being at home because of the underlying fear of having to return to the hospital. What if she throws up in the middle of the night and I don't catch it and she has to go back for pneumonia? What if she has some other health condition common in children with Down syndrome and we find out weeks from now and have to return? What if we find out in June from her Cardiologist that her heart defects are worse than they thought and she needs open heart surgery? What if? What if? What if? There are so many things that are unknown about her future that cause me to have trouble settling in the joy of having my baby girl at home with me on the couch while I watch the news.
This is where I am. Where we are as we are trying to navigate going forward. We are not hopeless, but we don't quite see the light at the end of the tunnel. Healing and leaving the NICU was a big chapter in her story, but it's a story that doesn't feel resolved. Her future still feels very unclear.
Every now and then I feel glimpses of God's assurance that our lives will be okay again someday soon. But those moments don't stick all the time, especially when I'm trying to keep my almost three year old from smashing playdoh on the carpet while I feed my eight week old pumped breastmilk through her G-tube, only to pump more breastmilk in thirty more minutes and start the routine all over again.
Life right now feels a lot different than what we originally imagined.
Back in January I debated giving away my breast pump, naively thinking I wouldn't need it this time around because this time around I'm a stay-at-home-Mama so this time around I won't have to pump a single day of my second born's life, and here I am this time around in between pumpings writing about her life and I'm pretty sure I've used my breast pump more in these first eight weeks than I did in all the days combined with Eliza.
Life right now feels different and harder than I thought it would before March 4th, and I'm not quite sure how it's going to settle. I know that the Lord's hand is over my life and Chris's life and Eliza's life and little Lindie Fern's life, but that doesn't mean we're guaranteed a seal of approval that everything is going to be okay and life is going to get back to our projected image of normal.
Lindie in her short eight weeks of life has already challenged us more than any other hardship we've faced. Her life has called us to get on our hands and knees before the Lord begging for her healing. It has caused us to surrender daily to the idol of control (and the illusion that we have it) over our lives and our children's lives. It was caused us to question our concern over the small and trivial things and refine our focus on the more important things. It has also drawn our attention back to the reality that this world is broken and it is not IT and heaven is the real deal and all these struggles are just light and momentary when thinking of heaven.
Her life has also brought us immense joy and thankfulness through others. Family, friends and strangers have been Jesus' hands and feet to us in this season. And I'm not just saying that. I mean it.
For the past eight weeks we have had a meal delivered to the hospital or our home every other day. (You can count how many meals that adds to, not to mention all the meals that have appeared in our freezer). We have had the kindest cards and words of encouragement sent to our doorstep and in our inboxes. We have been given incredible financial gifts and the sweetest packages. We have been prayed for more than ever before. Our church has rallied behind us in a way that models the gospel beautifully, and our community (both immediate and virtual) have humbled us beyond description.
Friends have asked me where we have seen Jesus in all of this, and right now we see him in all of you.
Thank you for that.
In all of this, we thank God for Lindie's life. We surrender to the reality that we know very little about God's plan for our lives and our future and our lives with Lindie in it, but we fully trust God with it all and we eagerly wait expectantly to see what His plans are. We know that having Lindie will be one of the greatest challenges of our lives. We also know she will be one of the greatest gifts of our lives.
Lately, I have been reading other DS parent's stories like crazy. Reading their stories is like eating after a long fast. Like I'm starving for truth and relate-ability (did I make up that word?), and the stories of other Mamas and their tears and stories of hardship and revealed joy is healing food for my soul. I relate to them on a level I can't even describe, and I don't even know them. (I can't wait to actually start meeting some of these Mamas)!
One of the things I've noticed is that all these Mamas say that despite it all- despite the diagnosis and the medical issues and despite the trouble feeding and the social stigma- they wouldn't change a thing. That their child with Down syndrome has changed their lives so drastically for the better that they wouldn't change a thing. (Can you believe that? That's beautiful).
Right now that's a little hard for me to believe. Right now if I could change her diagnosis I would. BUT, I am eager for the day when my heart shifts. When I make my peace with the gift the Lord has given us (a beautiful gift, a daughter with Down syndrome) and joyously move forward as a mother of a child with Down syndrome. (Or maybe I won't even think of her that way. Maybe I will just see her as she is, a beautiful child- a gift from God. Period).
Admittedly, I am not there yet, and I beg for grace as I do get there.
Until then, I want to begin to get to know my daughter, even if it's not the way I planned, and I want to celebrate her life, even while pouring breastmilk through a G-tube and yelling at Eliza to turn down Sparkle Spice (God love that YouTube channel) for the one hundredth time that morning.
I want to embrace the life the Lord gave me and the newborn daughter He gave me, even if it means my house is a disaster and I don't get to breastfeed and I have to deal with medical debt and I'm forced to be a little more antisocial than I'd like. (Darn germs).
I am excited to see the Lord's plans for Lindie's life. I am excited to embrace the unexpected direction of our future and be her greatest encourager, supporter and advocate. I have hope in the Lord that he has big plans for her and for us and that we will be forever changed because we know Lindie Fern.
One of the ways I want to celebrate Lindie's life is by telling the world about her and sharing her birth story. I absolutely love birth stories. I cry over them. I get all mushy over them. I want to have more babies after reading them. They are sacred and beautiful and memorable. I savored up every moment of Eliza's birth story when writing and I want to give Lindie the honor of doing the same.
So here ya go. It's long (especially after all that above), but it's hers.
We found out we were pregnant with sweet Lindie Fern on the fourth of July in between traveling to see family and watching fireworks. We had only been trying a month, so we were a little shocked at the suddenness of it all. We laughed under the explosions at what the next year would bring with two little ones on a blanket watching the skies.
We announced to the world that we were expecting another little babe after 10 weeks and many failed attempts to keep my growing belly a secret. (It's hard to do when you have a short torso, ya know)? We were so excited and eager to grow our family.
My pregnancy with Lindie was much like Eliza's. It was so normal. I was more than sick during the first trimester and lived off of Sprite and frozen foods while Eliza watched Zootopia at least twice a day for three months straight. I craved things like bagel bites and pulled pork and ate bacon and eggs for breakfast every morning. It was rough, but it was familiar and I knew there was an end in sight.
After the fourteenth or fifteeth week, the morning sickness subsided and I started to settle into the comfort and joy of being pregnant. (I love being pregnant after the first trimester)!
In October we found out that Lindie was a girl. We had all been expecting a boy. I'm not gonna lie- we were a little suprised and disappointed at first that she was a girl (just being real here), but we knew that the bond between sisters had the potential to be something fierce, so we were excited to welcome a baby into our family regardless of whether she was a she or he was a he.
I loved watching Eliza's excitement and knowledge of her baby sister grow and grow. She would often ask about the baby girl in my belly, give her kisses on my belly and talk to her through my belly button. She even caught on with all the belly pictures I was taking and started wanting to take pictures of her belly too. It was a joyous and exciting season in her life and in ours. I loved sharing the excitement with her.
In the third trimester I started having more painful Braxton Hicks, which usually were triggered by dehydration. I would get busy with my day and forget to drink water. Then baby girl would remind me with some major painful little reminders, so I would sit down with my glass of Pedialyte and water and relax and eventually they would subside. That was the extent of the drama that little Lindie brought on during pregnancy.
In those last months we narrowed down her name (although we kept it a secret- something we love paining our parents and family through) and found a doula (the amazing Jaclyn who I hope will help with any future babies) and we prepared our home to welcome our girl.
We were showered with beautiful gifts. We bought a house. We made a room with a crib and a big girl bed combined. We even watched the Daniel Tiger Epidsode with Eliza (the one where Daniel Tiger's mom is pregnant and goes to the hospital while Daniel hangs at the park with his Grandpear and then later goes to the hospital to meet his brand new baby sister, baby Margaret).
We were ready and happy and eager to welcome our little bundle of joy into our world and home and lives.
THE LABOR & DELIVERY
I (somewhat) predicted Lindie's birthday from the beginning. As soon as I figured out my due date (March 15th) I guessed she would come on Sunday March 5th, 10 days early like Eliza. Or at least I hoped. I also was hopeful her labor would be quick and ideal like Eliza's, that it would allow me to labor at home with Chris and my doula and deliver her safely at the hospital without pain meds. I was pretty spot on with most of this.
The week before Lindie was born (still a few weeks from my due date) I prepared like she was arriving that weekend. I grocery shopped for meals through Friday. I prepped our hospital bags and bought the few remaining things we needed for her. I double checked our plan for Eliza and Honey. I even made a few freezer meals. Then on Thursday (March 2nd) I had my best night of sleep in a long time. I woke up Friday morning feeling refreshed and energized. I suspected it was my "burst of energy" women talk about having before their babies arrive. (Although I never really remember getting that with Miss Rosie).
Later that morning I was hanging with some friends for coffee and told them that I was hopeful I wouldn't be able to make it to our coffee date the next week because I would have a babe at home. On Friday afternoon my doula came to the house and helped me with some prenatal yoga. We did a few different stretches to try to get baby girl in the right position for her birth. We chatted about me being hopeful she would come that weekend and said our goodbyes.
That night Chris came home a little later from work. (He too was suspecting it may be the weekend we would meet our babe, mostly because I was suspecting it would be the weekend. So he was trying to wrap up things at work as much as possible). Because he got home a little late we weren't able to go on our usual neighborhood walk, so I asked him if we could go walk around Target. He obliged, thankfully, and played with Eliza in the toy section while I made laps around Target. By the end of our Target trip I told Chris that my hips were feeling weird, and I was having some lower back pain that I wasn't used to. I told him that it felt like my hips were widening a bit to prepare for baby girl arriving. (I even texted my mom that evening and told her to make sure she had her phone on just in case we called her in the middle of the night).
We got home from Target and started our bedtime routine with Eliza. One of the routines consists of telling her two stories. Chris closed the night with a story about her waking up in the morning and going to the hospital to meet her baby sister, Lindie Fern. I remember closing her bedroom door that night and laughing with Chris that if we didn't have the baby that night she would be really disappointed.
Shortly after putting Eliza to bed, I double checked all our hospital bags, cleaned up the few things around the house and went to bed expecting to wake up in labor. (Christopher, on the other hand, stayed up late watching Doctor Strange and eating popcorn- a decision he later regretted).
At 2:30 am I woke up to cramps that felt like I needed to go numero two. I tried to go and couldn't, so instead I went out in the living room, got down on hands and knees over my yoga ball and started timing the cramps on my contraction app. Around this time Eliza woke up. (Of course she would wake up)! Chris got out of bed to check on her and noticed that I was out of bed too. He came into the living room and asked me what I was doing. I told him I was having minor contractions but wasn't sure if it was anything significant. (We were used to the dehydration contractions from before). He decided to go back to bed and lay down with Eliza. I told him I would let him know if anything changed.
By 3:00 am the contractions were regular and consistent at about 5 minutes apart, so I woke up Chris (which of course woke up Eliza). Chris decided to call our doula, Jaclyn, to see what she thought. Meanwhile, Eliza was on the ground in hands and knees position with me. In between contractions I played with her and goofed around. I still wasn't convinced I was in labor because it felt too easy. (Eliza's birth story began WAAAAAY differently).
Jaclyn suggested to try a warm bath for about thirty minutes to see if the contractions would calm down or continue. Chris drew a bath, and it felt amazing. Eliza colored on the side of the tub with her bath crayons while I labored and relaxed in the tub. We talked and giggled and enjoyed our time together. Since the contractions continued, we asked Jaclyn to head our way just in case this was the real deal.
Around this time we began get our plans in place with Eliza. Eliza understood what was happening- that her baby sister would be arriving soon (like I said, we watched the Daniel Tiger episode), but she didn't want to leave us. It was hard saying goodbye to her. I was so mixed with emotions. I knew it was the last time it would be just us two girls and that brought me to tears. At the same time, I was so excited to meet my second baby girl too. I kissed Eliza Rosie goodbye and continued to labor.
Jaclyn arrived around 5:00 am. From 5am to 7:30am I labored in a ton of different positions at home with Chris and Jaclyn by my side. I labored leaning on Chris, on hands and knees in the tub and on the toilet. We even took a walk down the street early in the morning to help move things along. I remember walking back to the house (because I had to use the bathroom) and seeing the sunrise thinking "Today she will see the sun."
Around 7:30am the contractions had started to get pretty intense. Jaclyn asked us when we'd like to go to the hospital. Chris wanted to go right away. I (thinking it was going to be a longer labor than Eliza's) suggested we waited until 8am. I was worried we would get to the hospital too quickly and then I would stall once we got there. I wanted to be sure she was coming soon by the time we got there.
The next thirty minutes went by in a blink of an eye. Before I knew it Mr. Christopher said "I think it's time for us to go to the hospital." I asked for the time and after seeing it was a few minutes past 8 am agreed to go.
The car ride was the worst. I labored on hands and knees in the passenger seat facing the back of the car. Even though I couldn't see ahead of us I knew that Chris was blowing through lights. Thankfully there was no traffic and we live close to the hospital.
As soon as we arrived we discovered that the hospital had recently closed the normal entrance to labor and delivery (peeeeeerfect). So after arriving and parking we had to get back in the car and make our way to the ER. In hind sight it wasn't a big deal, but at the time I remember feeling like it was a really overwhelming thing and I started to cry.
We arrived at the ER and the next little bit is a blur. (Thankfully Jaclyn and Chris filled me in on some of these things). They put me in a wheelchair and apparently RAN me up to labor and delivery. At some point I asked them to stop the wheelchair so I could labor standing up and they told me no. We arrived and determined I was dilated to 7cm. My goal was to be at least 6cm when I got there, so I was a happy lady. At this point the contractions had become unbearable. I labored leaning on Chris and on hands and knees in the bed.
They attempted to put an IV in me (while I was full in loan moans, hands and knees position thinking I was going to die) with no luck (which reminds me of the terrible IV pricking from Eliza's labor) and finally said that they would just worry about an IV later if I needed it. I do remember having a similar thought as I did at this point in Eliza's labor in which I told myself "next time I'm going to get an epidural." But that thought always goes away after labor is over. :)
I remember hearing talks of calling my doctor and waiting to do anything until she arrived. I also remember telling the nurses that "I didn't care who delivered my baby" and that "I just wanted her out!" At this point I felt like she was coming. It took everything in me to not push, which made me think it was time to push. So I started saying "I think she's coming!"
At this point they asked me to turn over on my back and the room got really quiet. Later Chris told me that when they turned me over he could see her head crowning. Within seconds my doctor was there gowned up, and she told me to push. I wanted that little girl out so badly. I pushed three times within one contraction and only 6.5 hours of labor, she arrived!
What I didn't know until later was that little Lindie Fern was born en caul (something her and I have in common) and that after I pushed her out, her little legs broke the sac all over the floor and my doctor and Mr. Christopher's Tom's shoes. (He needed new one's anyway).
And then there she was! Tiny and covered in vernix with a short umbilical cord (just like her sister), so short that I had to lean forward to be able to touch her (just like her sister). They waited a few minutes to cut the cord (per our request) and then Chris did the honors. (Apparently I told Chris that if he cut her I was going to kill him. I don't really remember this, so who knows)?
And then I got to hold my baby girl! But only for a few seconds. Those few seconds were so exhilarating. I had birthed this beautiful little girl with a head full of hair just like her sister's. She was here and 11 days early and perfect. She was everything I had expected and here she was.
That's when things started to get hard. First it was her breathing. "Her color is off," the nurses said. "We think she swallowed some fluid," the nurses said. They took her from my chest and put her in a little incubator and tried to get her to cry, to change color.
While the placenta was passing my eyes were fixed on Lindie Fern, only a few feet away but it felt like miles, sitting without me in a little incubator with a tube down her throat. I told myself they would fix it, and she would be back in minutes.
And she was. The nurse brought her back to my chest and continued sucking her tummy hoping to get the fluid out. I held her and looked at her and took her all in.
Chris was standing next to me on my right enjoying our new girl and that's when the nurse said it. That's when she said the news that even today makes my stomach queasy. She told us that she wanted to be "up front with us" and that "she showed signs of having Down syndrome" and then she told us what those signs were: the fold on the back of her next, her ears being lower set on her head and something about her hands.
And then she asked if we had any questions, like we were practicing for a quiz. And we just looked at each other and didn't and then she left. She wasn't rude, but she definitely wasn't kind or compassionate. It was kind of like getting hit by a bus and then being left to pick yourself up and drive yourself to the emergency room. This is the part that I wish I could go back and deliver the news myself to the two of us thirty-one and almost thirty-one year olds who were completely caught off guard and had no idea that the news of Down syndrome could be good news too. I wish I could deliver the news with hope and compassion and tenderness and be a great encourager to us. But that's not what happened.
Instead we were given the news abruptly, like a death sentence, and left to ourselves.
From there it seemed like everything else was just happening around us. I was trying to notice the features that the nurse told me my daughter had, but I also didn't want to see them. And the thoughts. There were so many thoughts, yet at the same time silence. So much silence and quietness and nothing being said.
My Mom came in around this time, and I told her. She told me something positive but I wasn't ready for that yet. I was in shock. I wanted to go back to 15 minutes (or was it 30 minutes or an hour?), to the seconds before I birthed my baby girl, and I wanted everything to be normal and for her to be healthy and for excitement to fill the room. For God sakes, I wanted a do-over! In life we are given so many do-overs and this was the time I wanted mine.
But instead I stared at this girl like I didn't know her. And I didn't. I had no idea what her diagnosis meant. I barely knew anyone with Down syndrome, let alone my own daughter that grew inside me for almost nine months. How could I have not known? She was my flesh and blood. But she didn't feel like it.
And then in came the world's worst lactation consultant who highlighted even more so the struggles that were just about to begin with my daughter. She wouldn't latch; she wouldn't suck. And the lady treated Lindie and I like we were in a race and the only way we could win is if we mastered breastfeeding in the next 30 seconds. And the whole time I was still taking in the diagnosis and crying. Yes, crying. I was crying while she was forcing little Lindie's head on my nipple.
At one point she stopped and said, "Are you okay?" and I didn't even respond, because seriously how was I supposed to respond in that moment, terrible lactation lady? But instead I just continued on and she made it clear that it wasn't working and asked if I had any questions and left. (I still can't even believe that interaction to this day. God help me to think nicely of that woman).
So there I was holding this child that I didn't know or understand, who couldn't nurse with nothing to say and I kept wondering when the baby I had expected was going to be born.
From there we were delivered to postpartum.
Time seemed to stand still. Texts had already been sent to friends and family before we found out she had Down syndrome and congratulations were being delivered, and suddenly I didn't' feel like being congratulated. I felt rushed and forced into actions I didn't want to do and feelings I didn't feel. Every time a nurse or technician or doctor walked into the room and congratulated us, I couldn't help but wince. Did they feel it too? Did they really think congratulations were in order? Did they notice my sadness overtaking the room?
The next two days were dark and full of tears. I couldn't sleep because every time I closed my eyes I saw sadness. When I looked at Lindie, I saw sadness. I was overwhelmed by my sadness. Sadness for Lindie, but mostly (an embarrassingly enough) sadness for me, Chris and Eliza and the dreams that had to die. Expectations that had to be let go.
Those two days were full of grief for me. For Chris, it was different. He was hopeful and encouraging and had already fallen in love with our daughter from the minute she was born. I, on the other hand, needed time for the shock to subside.
One of the hardest moments of those two days was the moment Eliza met Lindie.
About a month before Lindie was born I took Eliza to pick out a welcome gift for Lindie. We scoured the aisles of Target and after 45 minutes, and lots of redirection, Eliza finally picked out a beautiful pink owl rattle with bright geometric patterns. She was so excited about it. We picked out some pretty, floral wrapping paper and wrapped the present up with a note "from Eliza, to baby Lindie Fern." That present sat on our entryway table for weeks as a bright reminder of the gift that was coming our way. Almost daily Eliza would point out the gift and remind me that it was for her baby sister. Eliza didn't know it, but Lindie (AKA: Mama for Lindie) had also picked out a sweet gift for her "from Lindie." The gifts symbolized my expectations for my future baby girl. Thoughtful, planned out and full of beauty and meaning.
When Eliza walked in the hospital room that afternoon, gift in hand, my heart sank. It was a reminder of the life we used to have. The life of the two of us making daily trips to playdates and neighborhood parks. It symbolized relaxing visits to Target and picnics in our back yard and secrets we shared just between the two of us. All along I thought Lindie would just fit in to our way of life, but now it was all so different (or at least that's what I thought). Everything was much different than I had expected, and I didn't get the chance to warn her. She was expecting the Daniel Tiger story and this was not it. My heart broke for her.
But if my heart was breaking, she didn't even notice it. She walked into the room, shy and excited to meet her baby sister. She hopped up on the hospital bed, gave me a hug and stared at her sister with true love. She didn't notice anything was different about her sister. She was her baby sister. Like Daniel Tiger had baby Margaret, she had Baby Lindie Fern. Life was as she thought it would be.
Slowly over the next two days my heart began to soften. My sadness was not gone but hope appeared and was welcomed. We broke the silence and shared the news of her birth with our community and words of encouragement started to pour in. I began to feel less alone and more hopeful. My grief didn't disappear. It was still there hanging in the corner, but hope and happiness finally peaked its head in the door.
From there we went home and a day later Lindie was admitted to the NICU. I'm sure someday I will write more about all of that, but you can read the updates as I posted them starting here.
I do want to say that despite the disappointments we faced in the birthing and postpartum part of our stay at Saint Francis, we were blown away by the staff in the NICU Children's Hospital at Saint Francis. When I think of them now, thankfulness overflows the cup that is my heart.
Every single nurse, doctor, surgeon and staff member were incredible. They treated Lindie (and us) with love and care and it was obvious that they all are experts in their field. I am so thankful for every single one of them that we encountered, especially the ones we were able to spend more regular time with throughout those five weeks. They seriously are allstars. Someday when we're ready I want to go back and hug their necks and give them all the donuts and coffee there is.
Thank you for all the love and support you have shown us, dear community, during the past two months. We needed you and you were there. We are so thankful for you all.