The birth story of Eli Michael

What a year 2012 was. I learned so much about myself as a person. I changed in many ways over the course of the year. This was the year that I finally learned to live life. To fully embrace the blessings God gives us. Looking back on the year I cannot fathom how far we’ve come. The scared, confused parents we were in May are now strong, confident parents in December. Where our hearts were once broken, they are now overflowing with more love than we ever thought we could handle. When once we felt betrayed by God, we now stand firm in our trust for Him.

Although it seems like a lifetime ago, I thought the end of the year would be a good time to share Eli’s birth story. It’s time to close that chapter in our book of life. It makes me sad to read it now but I promised to be honest and that is what I am. Is it the amazingly beautiful birth story you may have read on other blogs about mamas who gave birth to their baby with Down syndrome (Kelle Hampton comes to mind here)? No. Is it a true reflection of my feelings at the time? Yes. Is it a measure of how far I’ve come on my journey to acceptance? Most definitely.

OCTOBER 25, 2012
The birth story of Eli Michael

We woke up early from a restless night of sleep. Our check in time at the hospital was 7am. We live 30 minutes to an hour away (depending on traffic). We left at 615am, not really accounting for the morning rush hour. Who’s late to their own scheduled c-section?! We were. We called the hospital in a panic. The gal who answered said not to worry – as long as we were there a half hour prior to our scheduled surgery time (9am) we’d be fine. Oh, ok. We arrived at 730am and checked in at the reception desk. We met my mom, Chuck’s mom, and my best friend, Alicia, at the hospital. Cody was still in his pajamas. I thought I’d have time to change him into his “I’m the big brother!” tee shirt but the nurse called us back right away. She seemed annoyed that we were “running behind schedule”. Uh oh. This was not off to a good start. We hurriedly kissed Cody goodbye and I started to freak out a bit. I didn’t want our last moments as a family of 3 to feel rushed and unimportant! Thankfully, Nurse Leslie said my family could come back once we finished up paperwork and I got all settled in. Phew. I asked about my mom being in the room, along with Chuck, for the surgery. Leslie said it was up to the anesthesiologist but that most of them say no. That is not what I wanted to hear. When Cody was born, it was so nice having her in the room with us – especially after he was born as I gave Chuck strict instructions not to leave his side. It was nice having my mom there to keep me informed as to what was going on since it was hard to see. I said a silent prayer that God would send us an understanding anesthesiologist. Prayer answered! We were greeted by Dr. Levin who gladly agreed to have an extra person in the room – in fact, he told us, he’d “sell tickets and put up bleachers” if he could as he didn’t care how many people were in the room – as long as the patient (me!) was happy. What a relief! Saying goodbye to Cody and taking our last picture as the Harrington 3 was so unbelievably hard for me. I was overcome with emotion. Fear and worry were most prevalent. What if something happened to me during surgery? Would he resent us for bringing a baby into our family? It’s hard to admit, but I was just so sad – and scared. After five months of worry, fear, anger, and then acceptance – it was time to meet our son. What if everything I feared was true? I was visibly shaking. I kissed Cody goodbye and prayed that God would keep watch over all of us.

Nurse Leslie told us it was time to go to the OR. If you haven’t had a c-section before, you wouldn’t understand the awkward feeling of walking yourself into the operating room. You climb up on the table and wait for the spinal block. After that kicks in, you aren’t walking anywhere. The first time I had a spinal block I told people it must be what a drug user feels when getting “high”. A warm sensation rushes over your body and then everything is numb. Thank goodness for the anesthesiologist. His job was to watch over me. He was so patient. I kept feeling like I couldn’t get a deep breath. He kept telling me my oxygen levels were perfect. I felt panicked (probably had nothing to do with oxygen). He asked if extra oxygen would make me feel better. I told him it would – and it did. After about thirty minutes of a little tugging (that’s what it felt like to me anyways), Dr. Lawler (my amazingly wonderful OB) told us it was almost time to meet our son. Wow. Here we were. It was time. I couldn’t stop thinking about what he’d look like. And then, Eli Michael was pulled from my belly – the nice warm place he’d been for nine months. The place where he was protected from everything the world could throw at him. The place where he stayed while my unwarranted fears continued to plague my mind. As Dr. Lawler held him up to us, the first thing I noticed was he looked just like Cody did – and then I realized he wasn’t crying! The NICU team was on standby and quickly rushed him to the exam table. I could see them doing things I hadn’t seen them do to Cody. They put oxygen on him. He still wasn’t crying. I asked my mom what was going on? What’s wrong with him?! I also, sad to admit now, asked if he looked like he has Down syndrome. I kept asking her if “you could tell”. Her reply was always, “he’s beautiful”. The NICU nurse came over to tell me he was having difficulty breathing so they would have to take him into the NICU. Although it was only minutes, it felt like hours before they showed me my son, very briefly, before taking him away. Wait! I wanted to scream. I was overcome with fear. But this fear was different than before. I never invisioned this happening. All I wanted was that moment where they put Eli on my chest and I whispered to him that I’m his mama and will love him forever. But instead I caught a quick glimpse of him as they were rushing him away so they could help him breathe. Chuck never left Eli’s side. Where I was left wondering what was happening, Chuck was living and experiencing it first hand. That could not have been fun. He saw our sweet son in a battle that must have been so scary to witness. He gave me updates via text once I was transferred to the recovery room. I kept asking for a picture but he didn’t send one. Now I know it’s because he was hooked up to a CPAP machine (a breathing mask that forces air in the lungs). The CPAP is a much less invasive way of getting air into the lungs versus a breathing tube (ventilator) but I can only imagine how terrifying it was for a daddy to watch his newborn struggle to breathe then end up with a huge mask on his face. It turns out, he had a pneumothorax, basically a small leak from his lung. Thankfully he was only on the CPAP for an hour. He eventually was just being treated with a nose canula (prongs up the nose). I finally received a picture of my sweet baby. Although he was hooked up to a lot of monitors, etc. I could still see his cuteness shinning through. I could also see the Down syndrome. I kept pointing out the features. His eyes were slanted. His ears were crooked. Everyone else got to meet my son before me. One by one visiting family and friends would come into my room and tell me how adorable he was. I felt this need to point out his features. Maybe it was my preemptive way of protecting myself from hearing someone else point them out. Bless everyone, they would respond in the kindest ways – “He looks just like Cody!”, “He’s so beautiful!”, “He’s absolutely perfect”. I thought they were just sugar coating it. I just wanted to see him – in person! It wasn’t fair that everyone else was meeting my boy before me! The nurses were trying to figure out a way to get me to the NICU room. If I could’ve walked, I would have. I couldn’t even go in a wheelchair. The only option was a gurney as the portable bed I was in would not fit into the small “room” Eli was in. Unfortunately, all gurneys were being used so I had to wait. And wait. And wait. It was a very busy day in the labor and delivery unit that day. I kept hearing babies crying. I felt sorry for myself. I never envisioned being separated for so long from my son. He was a part of me for nine months and now I had to wait to meet him. Finally a gurney was available. I was wheeled to the NICU and rolled up next to his “crib” (although to me it looked like a table with a warmer and a bunch of wires and tubes connecting my baby to it). I reached for him but couldn’t touch him. He was too far. His nurse said I could hold him so they lifted him to me and put him in my arms. I got to look at him and smell him and feel him. I told him I was his mama and that I’d love him forever. Finally. Chuck went and got Cody and we were all able to be together. Not how I had once pictured but it didn’t matter – we were together. Unfortunately, I couldn’t stay there and he couldn’t come with me. I promised him I’d be back as soon as I could. And I was. Later that evening, Chuck wheeled me into the room to see him. I looked closely for every single feature the books on Down syndrome said he could have. I then looked at his cute button nose and his beautiful lips and his tiny feet. I held his hand. He grasped my finger. It was like he was pleading with me to not let go. To accept him for everything he was. I whispered to him that everything was going to be ok and then I cried. I cried because I finally felt relief. I finally let go of the shallow fears I had about what he’d look like and embraced him for his uniqueness and thanked the Lord for the beautiful boy He gave to us. Our son. After that, I no longer saw Down syndrome when I looked at him. I saw Eli Michael. I constantly stared into his beautiful angel eyes and wondered how something so perfect could have been chosen for us.
We stayed in the NICU for 7 days. Eli proved his strength and tenacity many times over during that week. The nurses were constantly impressed by his strength. Mommy wasn’t so strong. It was so hard seeing him hooked up to so many monitors. Each setback was like a kick in the gut. It was exhausting to live in a hospital and heartbreaking to be away from Cody (although he had a great time with Nana and didn’t seem to miss us at all!). But that week taught us to celebrate every accomplishment, big or small. It taught us to never take what we have for granted. It gave us the opportunity to truly bond with Eli without the other distractions in life. It gave me time to fully embrace our new normal. Life was going to be a little more challenging but in one week we became fighters. We left the hospital ready to take on the world. Ready to protect and cherish the most amazing gift God has entrusted us with.

Two months later, I never see Down syndrome when I look at Eli – I see the perfectness that completed our family. He’s the apple of his daddy’s eye. The best gift Cody received for Christmas (his words!). To me, he’s my heart and my soul. He has given me life. He has taught me to truly live in the moment, every moment. I thank God every morning for each minute I am blessed with my boys. I believe He took parts of Heaven when creating our children. He blessed us with a shinning star (Cody) and a perfect angel (Eli). Today, I ring in the New Year with new faith, new peace, and new hope.

Cheers,
Melanie

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Everything will be ok

So I’ve been struggling the last few days. I have this overwhelming feeling to pack up my little family and run – run far, far away. That obviously won’t fix anything since I’m pregnant and my worries are all about my baby growing inside me. I feel like I’ve been in denial. Like I’ve just been saying how accepting we are of this whole thing because that’s what everybody wants to hear. I want everyone to see how ok I am with all of this. And most of the time I am. But all of a sudden I’m filled with anxiety and fear again. What if we don’t have all the support we thought we were going to have? What if we can’t afford to provide all the care needed for our baby with special needs? What if…

On the beach last month Chuck and I promised to stay in the moment and not worry about the future so much. In theory, that’s a wonderful idea (and it’s worked thus far), but you can only ignore your fears for the future for so long. At first our fears were centered around the very distant future – Would our son live with us forever? Could he get a job? Get a high school diploma? Go to college? But then we realized we didn’t know anything about our Eli besides the fact that he has Down syndrome. Why worry about things we have no way to predict? We’ll do everything we can for Eli so he has the best possible life, and future. But now my worries are more centered around the next few years. Will he walk? Talk? Be able to feed himself? Will I have a
“toddler” for the next 5+ years??? I adore my oldest son, Cody, but we’re only at the beginning of the toddler stage and it’s challenging! I don’t know if I can do this for a few extra years, or worst yet, forever. I worry about how different our lives are going to be. I like our life now. I don’t want it to change drastically. What will that do to Cody? Will I be able to give him even half the amount of attention he gets now? I want to focus my energy on getting my baby well (he has a suspected heart defect – an ultrasound will either confirm that suspicion or give us great news on July 3rd). How can I focus on one child without taking my focus off the other? I’m sure this is a concern of many moms facing the birth of their second child. And I know it’s normal and obvious that the first child will not get all the attention of the parents anymore. But our case is different than most. What if Eli needs to spend extended time in the NICU at birth? How do we spend time bonding with Eli and keep Cody feeling secure and comforted? We are a very attached family. He’s never spent the night away from us. He’s only been with a babysitter (his Nana or his Grandma) a few times for a few hours. Everyone says how unhealthy that is for all of us but we just like being together. Now I’m scared that he will feel abandoned when Eli arrives.

I remember the overwhelming fear that hit me the night before my scheduled c-section with Cody. We were cuddling with our two dogs and I said to Chuck, “I don’t want our lives to change. I like it the way it is!”. I laugh thinking back to that night because our lives are so much better now! That next morning my heart exploded with love for my new baby. I have never experienced a love so great. I keep trying to remember that. I was fearful of change before Cody’s arrival. I’m fearful of the change that will occur with Eli’s arrival. Will it be different? Of course. But my heart has room for more love.

I’ve heard it said that once you receive this diagnosis for your child you go through a mourning period, grieving the loss of the child you thought you were having. Sadly, I am all too familiar with grief. I know it goes through stages. I know it comes and goes. I will not beat up on myself for going backwards in my grief. I know tomorrow, or next week, or next month my feelings will once again be different. I am so thankful we received Eli’s diagnosis prenatally. Many people have to deal with this roller coaster of emotions all while trying to bond with and care for their baby when they find out at birth that their child has Down syndrome. I can only imagine how difficult that must be. So, I am grateful to be able to go through this now, when Eli is completely unaware. I pray that when he arrives my heart will once again be exploding with love and everything will truly be ok.