Jude's Birth Part 2

As soon as I looked into those gorgeous, deep blue, upturned, almond shaped eyes, I knew our precious 6 lb., 3 oz., 19.5 in. baby boy had Down syndrome. I felt completely numb. I looked up at Nick and asked if the doctors told him that Jude had Down syndrome. He said no and quickly brushed off the possibility of any thing being wrong with his son. I looked at Jude again, that tiny button nose, chubby round cheeks, cute little protruding tongue, so comfortable and peaceful in his momma's arms. I knew without a doubt. Again, and more confidently, I told Nick that our son indeed has Down syndrome. He said something to me that I still cling to and will never forget. He simply said, "Well, if he does we will still love him and care for him, steward this unique journey from God, and His grace WILL be sufficient." Two nurses came back into the room. I clung to my last hope that we wouldn't have to walk this path and wished they would tell me I was being paranoid. I turned to the nurse on my right and straight up asked her, "Does he have Down syndrome?" She stammered and avoided the question for a few moments, so I looked for the answer in the nurse on my left. I repeated the question. Her response was, "What makes you think he does?" I listed off a few of his characteristics. Long pause. "We are suspicious." was all Left Nurse said. They told me they were going to take him up to the nursery for a bath and some monitoring and that I could have the hospital's pediatrician see him if we wanted. We did, obviously. As a nurse approached me to take my son away, my momma instincts kicked in. I asked to nurse my baby, but was told I could not do that until after he was checked out. That was that, they whisked him away.

I was absolutely sick, feeling a hollow like I never had before. I'm sure Nick and I talked before he left to go tell close family in the waiting room, but I don't remember what was said. I sat in that recovery room alone, aching to hold my baby, until my friend (the one I texted from the ambulance) giddily bounded into the room. I tried to put on a smile as her joy turned to confusion. "Where's Jude?" I don't remember exactly what I said but it was something like, "They took him to the nursery, and they think he has Down syndrome." She immediately embraced me, and we sobbed together. She and her husband were two among countless people who carried us through unimaginable pain and confusion. Two of many that rejoiced with us, wept with us, prayed over us, spoke Truth into our souls, fed us, encouraged us, laughed with us, agonized with us, selflessly served us, physically wiped our tears, and on and on. I got to see in a very tangible way how the Lord had faithfully gone before us and prepared us for this journey with Jude, specifically by putting people in our lives who loved us so well. We are eternally grateful for every God-given and gracious word that was extended to us by our family and friends. Each person who visited, held and loved our son, and offered a presence and listening ear breathed more healing and joy into our sorrow than they will ever know.

Hours later, baby Jude and I were finally reunited, and I proudly introduced him to our family and friends. Hear me loud and clear here: though there was immense darkness and an infinite amount of tears, upon seeing Jude again, I instantly fell deeply and FIERCELY in love with that little baby. I told a lot of people this, and it is the honest truth- I thought my heart may explode from the amount of love and pride I felt for this perfect gift from God. He was (and still is) the most beautiful thing I have ever laid my eyes on.

For most of each day that we spent at the hospital, our room was filled with visitors who maintained an aroma of excitement, happiness, joy, celebration, and love. That baby deserved that. His precious life deserves to be rejoiced over and celebrated with those we love. And, boy, did baby Jude get that. The morning after he was born, I woke up to his daddy holding him close, reading the Bible to him. The book of Jude to be exact. For real, I have no idea how my heart didn't burst. For the rest of our stay, we flooded our room with worship music. We clung to scripture even more tightly than before. Which reminds me of another sweet moment when a close friend held Jude for the first time. He told our son how much he loved him. He whispered Joshua 1:8 to him again and again "This book of the law shall not depart form your mouth, but you shall meditate on it day and night, so that you may be careful to do according to all that is written in it." I told you, the Lord has given us some incredible friends.

There are a few other things I remember about our hospital stay. Jude was seen by a very distant and impersonal pediatrician, who handed us an outdated pamphlet with limited and vague information about Down syndrome on it. She said he looked good, deferred further testing, and wished us well. Then, Jude dealt with a bout of jaundice and had to wear a biliblanket while we were in the hospital. We had the most wonderful, compassionate, and kind team of nurses. I remember being given the option of being discharged a day early, but I opted to stay another night at the hospital because I couldn't mentally handle any more unexpected change in plans. I remember how I would religiously and proudly chart every feeding and every dirty and wet diaper. I remember how concerned we were when Jude failed his hearing test twice (he passed it a few weeks later). I remember that the best remedy for when I felt like I was falling back into darkness was simply holding Jude in my arms. Instantly, layers of sadness would be peeled away and joy would emerge, abundantly.

We met our regular pediatrician on the day we were being discharged. She came as soon as she got word from my OB and was disappointed that nobody notified her before then about Jude having Ds. Let me tell you, our pediatrician is a complete God-send. She handled our situation flawlessly. Within two minutes of meeting her, I found myself hugging her tightly and sobbing into her shoulder. She jumped right in and ordered a karyotype and echocardiogram. She has been more than on top of everything since then, and she puts up with my crazy first time mom questions. She makes me feel like she really knows and loves Jude. Right away she connected us with families in a similar situation, gave us solid resources, and guided us on where to start with getting Jude plugged into the services that he would benefit from. She gave us hope and relief, when she simplified things for us in those first months. She told us to love him, feed him, nurture him, talk to him, and treat him just like any other baby and to worry about the other stuff later. We could certainly do that. She took a lot of the burden away. We love her, a lot.

Before leaving the hospital, we went up for Jude's echo. Nick and I were weary and beyond exhausted at this point. We waited in that room forever as the technician searched thoroughly for a defect in my son's teeny tiny heart. Back aching from slumping over in pain from major abdominal surgery. Chest burning and swelling from the changes that come with nourishing a newborn. Endless prayers that there would be no anomalies found in his heart. Completely and emotionally spent. Then, the results came- two small holes. A PDA and an ASD. Neither requiring open heart surgery. Praise the Lord!! (The PDA has fully closed, and the ASD is being monitored in hopes of it closing without intervention.) Finally, we were going home to settle into a new normal.

I will treasure that first week home for the rest of my days. My mom and sister stayed with us, Nick's parents visited frequently, and Nick took a week off of work. Mom and Ceci cheered enthusiastically when we drove up.  They had signs up on the door, chicken parmesan in the oven, and candles lit. Jude was welcomed into a home that was more clean, comforting, and inviting than it had ever been. That week, we all laughed together, ate all of our favorite home cooked meals, and adored and celebrated Jude intensely. There was so much love and warmth in our full house. I am so grateful for the way that they loved us so tangibly that week.

I need to brag on my man, too. Nick was (and is) my rock. He was constant, strong, courageous, and steady. He wept and grieved, but He never wavered in His confidence and trust in the character of the Lord. He held me together, gave me grace, washed me in the Truth. He was one proud new daddy who loved our son deeply and irrevocably. He patiently listened as I tried to process aloud the heaviness I felt every single day for the first weeks. A weightiness I was afraid I would have to carry forever. He didn't condemn me when I literally screamed at the top of my lungs and punched a wall in frustration that my baby wouldn't wake up to nurse, ever. He embraced me in his strong arms for as long as I needed as I cried. He whispered infinite prayers over me. He never asked me when I would be done being sad. He was incredibly gracious and kind, and he never strayed from the Truth. I remember walking through the park with him and Jude. He asked how I was feeling that day, and I told him it was one of my "heavy" days. He asked me to recount ways in which the Lord had been faithful to our family. I told him that I couldn't. So he reminded me. He listed off ways in which God had kept His promises to us: how He provided for us, comforted us, kept and sustained us, placed us in a solid community of friends, blessed us with a healthy, thriving son. How he had given us a sure and true hope. He would remind me that even amidst our sorrow, because of Christ, we had something unshakable to rejoice greatly about. He constantly reminded me of the Gospel- the greatest news. That because of sin we were separated from the God who we were designed to be in relationship with. BUT Christ paid in full the penalty of our sin. Jesus endured the punishment that we deserved, and we received His righteousness, by grace through faith in Him alone. Through Christ we are restored to right relationship with God. We are given the hope of eternal life. I can rest in a good and loving Father who promises me His very presence. Nick would recount this for me countless times until I could remember on my own. That man is pure gold.

I wish I could fully describe the intensity of the emotions I felt in those first few weeks. I rejoiced mightily, but I grieved, too. I grieved hard. I grieved over the loss of the son with one less chromosome that we had expected to bring into this world and had dreamed about for 9 months. I grieved out of ignorance, knowing next to nothing about Down syndrome, and having never really interacted with an individual with Ds (or any intellectual disability, for that matter). I grieved at how suddenly and drastically our lives had changed. I grieved over having to walk a path that I didn't think I was equipped for. I grieved out of a lack of trust in the Lord, so easily forgetting that He never makes mistakes and that He's always good.

My grief and sadness slowly melted away week by week, and by May, I was happy with our new normal. I vividly remember how sweet it was to think to myself for the first time that this journey could actually be fun and exciting. It was a genuine shift in perspective that was another good gift from God. A huge turning point in Jude's story came when we were preparing to have Jude dedicated to the Lord in front of our church family. In preparation for the ceremony, we answered questions that made us dream about what qualities we wanted to instill in Jude. We were so excited and refreshed in doing this. We quickly realized that, though our journey had taken an unexpected turn, the ultimate goal was the same. We still hoped, prayed, and parented Jude with this end in mind: That Jude would know Jesus intimately, follow Him faithfully, boldly proclaim the truth, and that God would use Him mightily for His kingdom. Just as we had prayed and dreamed when we found out about the precious miracle I was carrying inside of me.

If I could go back and have a conversation with myself a year ago, it would go something like this: You think you are surprised now about a measly extra chromosome?! You just wait, even bigger surprises are coming. Surprises like: before his first birthday, you will realize that all of the grief and sadness were unnecessary. You will be more surprised that your laughter will vastly outnumber the tears that you thought would never stop. You will experience more victories than challenges. You will be grateful that you get to enjoy each stage just a little bit longer. You will have the privilege of teaming up with committed therapists and medical professionals who believe in your beloved son. You will be inspired and empowered by every family who is walking a similar path. You will fall exponentially more in love with a little baby boy who is strong, smart, silly, brave, moody (like you), snuggle-y, stubborn, and joyful. Your heart (seriously this time) will burst when Jude belly laughs at his Aunt C for the first time. Your thoughts will not be consumed by Down syndrome, and Jude will not be defined by his diagnosis. Your confidence in the Lord will outweigh your fear and anxiety. You will find comfort in God's sovereignty and unconditional love. The Lord will hold you even when you try to push Him away. He will bring immense joy in the unexpected and the mundane. There will be so many more good days than hard days. You will long for Heaven like never before, and cling unwaveringly to the hope you have in Jesus. I know it will seem impossible, but God WILL do all of things and more.

And I would be right.

Happy First Birthday to my Jude Shaughnessy! You are loved beyond measure.

 

 

Jude's Birth Part 1

I am embarrassed to say that it has taken me a year to try to recount those first few days of Jude's life. To say it was a whirlwind is a severe understatement. I think I felt every emotion that could be felt in those days. It has been emotional thinking back to what seems like an entirely different life. Memories and details just keep flooding back to me, especially as I sit in the quiet, nursing Jude to sleep two nights before his first birthday. The dim hall light is softly illuminating every detail of his perfect face. It's only one of my favorite parts of the day, when he falls asleep in my arms, and I hold him for one more minute staring into his sweet peaceful face- it is indescribable. He is such a gift. I could go on for days talking about how life is now and how sweet of a privilege it is to be Jude's mom. I could even talk about some hard things (like, how I almost lose my mind when he won't stop fussing on long road trips), but I really wanted to write down some things about what I remember from his first few months.

Like I said before, it was a completely emotional whirlwind. So, here are my scattered (and unfiltered) thoughts. I had a really easy, enjoyable, uneventful pregnancy that I really tried to savor. I looked forward to each symptom, kick, ultrasound, check up, baby shower, etc., and they were all as wonderful as I'd dreamed in those 2.5 years prior when Nick and I were longing for a baby. My memories become a lot clearer around the new year. For some reason, I vividly remember New Year's Eve 2014. It was a lazy night at home with Nick, flipping back and forth between some of the NYE specials on TV. There was one show that told the stories of the most inspirational people of 2014. One in particular was about a boy with some sort of disability and his dog. I just remember getting very teary-eyed and telling Nick, "You cannot make the hormonal pregnant lady watch this stuff." I remember telling him something to the effect of- "that could be us" (with a child with special needs). The next day we received the news that my cousin and his wife had had their baby. Full disclosure, I was a little jealous and really hoped that my baby boy would make his grand entrance soon, too. At this point, I was more than ready to meet our boy, not because I felt huge or tired or anything. Besides wanting to have him in my arms and kiss his sweet cheeks, I honestly was just tired of worrying if he was OK and safe in my tummy. I had begun to notice that he was moving less- not that he ever moved like crazy before- just less. On January 2nd, I began to worry so much about the lack of movement that I went to L&D to have him checked out. After hours of monitoring and having an extensive biophysical profile ultrasound (which he passed), everything checked out fine. We were told that he was breech and that I was a little dehydrated. I was 36 weeks into the pregnancy. At my next regular checkup, I relayed this new info to my OB, and she said a scheduled c-section at 39 weeks (January 19th) would be my best option- I agreed hesitantly, wondering if that was my only option. I finally came to terms with the fact that I was going to have a c-section and started praying that I could at least go into labor. Strange, right, who asks for that? Well, I wanted to experience as much of the "natural way" that I could. On a Tuesday (Jan 6), I went to lunch with a friend, and we talked all things baby and what to expect. I had started to feel some tightening and discomfort that day. Wednesday, Nick and I went to our favorite Mexican restaurant for dinner. Thursday, I picked Nick up from work and talked him into going grocery shopping with me. I remember how fun this was- just doing ordinary adult things with my best friend. Those two nights of sweet time were a blessing from the Lord because it would be the last hoorah for just the two of us. And, OH, how our lives were about to change!

Contractions were intensifying so much so that they would stop me in my tracks. Tuesday and Wednesday they only seemed to come at night. But Thursday... Whoa! I was up all night pacing and timing contractions. They were very sporadic. Some were close together, and some were as far as 30 minutes apart. I didn't want to be a wimp who rushed into labor and delivery with every twinge of pain. So, I waited until morning to call my doctor. Hours later, they called back and asked if I could be there as soon as possible. Nick had my car, so I called my mother in law for a ride to the doctor. This was on Friday- my appointment was at 12:15. I maybe had one contraction on the car ride over and thought to myself, of course they would stop- they're going to think I'm silly for coming in. Shortly after we arrived, I was taken back to an exam room. I put the gown on, explained my symptoms to the nurse, and waited for the doctor to come in. She laid me back and in seconds had a very surprised look on her face. She asked me if my water had broken, and I told her i didn't think so. She then informed me that I was about 4cm dilated, and that (are you ready for this...) she thought she felt little toes. She instructed me not to move and grabbed another doctor for a second opinion. Second doctor checked and confirmed. Again told to stay put while she called an ambulance and went over the game plan. Dr. 1 told me she had to be somewhere in an hour so Dr. 2 would have to do my c-section. Our baby boy would be here within the hour! Karmen was called in, and I told her to get a hold of Nick and my mom. I called my sister as I lay exposed on the table and quickly tried to explain to her what was going on. The ambulance (and a fire truck??) came minutes later. The EMT crew seemed a little (read- a lot) unprofessional, and some strange, off the wall, can't-make-this-stuff-up conversations ensued as they prepped me for transport. I won't even go there. That felt like eternity. Surprisingly, though, I felt so much calm and peace at this point. The Lord sustained me amid major chaos. I texted my friend, who worked at the hospital I was delivering at, and told her I was on the way in an ambulance.

I arrived at the hospital- sat in the elevator for forever while my medical team scrambled around looking for a security key or something. We went up to the room where they began to prepare me for surgery. The chaos intensified. Nick was there when we went up. Nurses and doctors were in and out. Briefing me, asking hundreds of questions, losing my chart, shaving me, more questions, instructing Nick, putting IVs in, arguing with the doctors who were trying to hurry the process along. It was an out of body experience, to say the least. An anesthesiology student asked if he could perform my epidural- sure, why not? Nick was understandably quiet and in total shock that we were about to meet our son 2.5 week early. I kept trying to reassure him. Finally, I was being wheeled into the OR. I received an epidural while curled up on my side as a nurse held me in the fetal position. I was told not to flinch, but I literally could not control myself. The anesthesiologists finished the epidural, and the tingling and heaviness started at my toes. They let Nick back in at some point. As the numbness rose up my body, peace melted away and panic began to set in. I couldn't look at Nick because I didn't want to scare him. I focused on my breathing. I tried to set my thoughts on Jesus as the doctor cut into my abdomen and attempted make small talk about Elvis's birthday. Minutes later, I felt the pressure and tugging of them delivering my baby boy. At 1:48 pm, the OB exclaimed, "He's so cute!" I faintly remember a sweet little cry that I would give just about anything to have recorded. I looked back at Nick and shared a moment of pure joy (but not relief) and tears of indescribable gratitude over the birth of our Jude Shaughnessy. I don't think Jude cried long. I remember it getting pretty quiet in that cold, sterile operating room. The neonatologist hustled out of the room saying, "You have a healthy active little boy." The doctors invited Nick over to meet his son for the first time. More joy and more tears. He took a few pictures and came to show me. I thought he was so beautiful. There was so much joy and love at the sight of my son but still no relief that everything was OK. They wrapped him up and let Nick hold him briefly. Pure elation set in at the sight of the love of my life holding our son for the first time. I was wheeled back to the recovery room, anxious to finally meet my baby boy. One of the nurses gently placed Jude in my arms and exited the room, allowing Nick and me the privacy due for such an intimate moment. Jude was wrapped snugly in a hospital blanket and had a tiny hat on. I looked into his sweet little face and I knew, immediately.