Where do I even start?
It's been nearly 3 weeks since Eliyanah made her appearance and it's taken me this long just to think about writing out our story. A dear friend told me I need to be writing all of this down, and I knew she was right. But it's been hard to process through things enough to get the words out. I realize now that one of the reasons she said that to me (I think) is because it's therapeutic and healing to put things into writing, and perhaps while helping myself process and heal, this can be encouraging to others. So, here I go, and I am sure this is just the beginning of our story, so expect more chapters to come!
As many of you probably knew, we thought we were done having children after we moved to North Dakota. I couldn't imagine going through it all again after Esther and I didn't know if home birth would be possible here. Plus, I have such a special relationship with my NH midwife that it was scary to think of starting over with finding one. We had talked about it and decided we were content with where our family was at. So in August of last year, when I found out I was pregnant, it was a complete shock. I will admit that my first thought was not excitement. I was almost 40, in a really good place with all my kids, and feeling like I had some freedom and independence back after leaving the baby stage. I say all these things because I want to be transparent. I felt like I was supposed to be overjoyed, and yet I was fearful, anxious, and even a bit sad. I had a wonderful support system speak life and encouragement into me, and soon I became more thankful and excited to add to our family.
Everything went relatively well with this pregnancy. I was very sick with morning sickness for several weeks, but after that was over, I felt pretty good. I did get sick a lot over the winter months, which was frustrating, but I recovered just fine. This little girl moved constantly. I first felt her move at 11 weeks. Yes, 11 weeks! I know that sounds crazy but it was definitely the little flutters of a kicking baby. At the ultrasound, she was doing flips, stretches, and just constantly changing positions. I felt so thankful that she was healthy.
As the pregnancy progressed, I became more and more tired and uncomfortable, but I didn't feel like I was carrying a big baby like Esther and Judah (both were over 9 lbs!). I started feeling like she was maybe going to come a bit early, which is unusual for me because I have never actually had a baby early. A lot of this was just a "feeling" that I can't explain.
I did find a midwife and she is wonderful. I took all her advice and I feel it really helped me and the baby to stay healthy. Everything was good to go for a home birth. And during the last week of April (I was due May 6th), things started changing quickly and then I KNEW she was going to come early.
Thursday night I started feeling sick and was up all night just feeling unwell. But it wasn't a virus, it felt very much like the beginning stages of labor. I didn't really have contractions, but I had enough signs of labor that Derrick stayed home (plus I hadn't slept all night). Contractions picked up and I ended up having my midwife come out to check on me that Friday night. In hindsight, my body wasn't ready to kick into gear and I should have probably waited a bit longer to have her come check on me, but at the time, I thought this was happening. I had contractions all night Friday night, but they were really far apart (Like 15-20 minutes or longer), and weren't getting closer. They were strong enough that it was difficult to sleep, though. So it was a very long, sleepless night for all of us, and still no baby.
Saturday morning I felt that I just needed to relax a bit with my family. So the midwife left for a while and I tried to do a few normal things to get my mind off labor, even though I was still having contractions. At some point late Saturday afternoon, I started leaking a tiny bit of amniotic fluid, a very slow leak. It wasn't really enough to know for sure if my water had broken, but I knew something was definitely happening. I should mention that this was nothing like any of my other labors. For the rest of them, my water had stayed completely in tact until the babies were born (or in Chloe's case, they broke it at the hospital). So even though this was my 5th, it was like a completely new experience. Contractions got stronger throughout the afternoon. I really had to wrestle a bit with God and be patient and surrender to Him and His timing, even though I was SO incredibly ready to get this baby out!
Around 9 pm, contractions really got strong. Still far apart, but oh they really hurt, they were the real deal. The kids were excited that Mom was in pain, because they knew it meant the long wait was almost over. I tried to lay down to sleep a bit, but that only lasted until about midnight. I was able to relax and rest a bit, but when they just got too strong, I called the midwife to come back. She arrived at about 1 am. And as soon as she got here, contractions went from 15 minutes apart to 7 minutes, then 5, then nearly back to back! Just as quickly as that. I kept feeling like something was different. These contractions hurt more than any I could remember having before. Thankfully this part was relatively short, and Eliyanah Eden was born at 3:19 am, in our bedroom, with Derrick right beside me. She started to cry right away and I was so relieved. Little did I know, this was just the beginning of our adventure with our sweet baby girl!
I cherish those early hours before we knew anything else. Just that she was here, the wait was over, and I could rest. She was ok and so was I. The kids met her and then went back to bed. The house was quiet and calm. I will always appreciate that little break between labor and what came afterwards. It was beautiful. As the day went on, I realized she was very sleepy and not eating really at all. I thought it was weird but didn't make too much of it, since she had already nursed a few times and I knew we had both been through an ordeal. Not only was the delivery extremely fast, but we had learned that the umbilical cord was short, and it took her a while to fully get her color because she needed to catch up a bit. Nothing to worry about, she just needed a little time. Another unusual thing is that this girl was TINY! I don't have tiny babies, even Chloe was almost 8 lbs. But this little one was swimming in newborn clothes. I knew this was different, but again, didn't think much of it. I had also not slept in 3 nights and it didn't all hit me right away.
Later in the day, I looked up "short umbilical cords" on Google because I had never heard of it before. One of the first things I read was that this can be associated with Down Syndrome. My first thought was that it was just a coincidence, but then I remembered that I had thought her eyes looked a little funny when she was first born. I chalked this up to swelling from the birth, but now I couldn't shake the feeling. I looked up what the physical markers are of Down Syndrome, and I thought she might have one or two others, but wasn't sure. I asked Derrick and his first response was that I was overthinking things (which I do about everything, lol), and that I needed to relax. I could not push this out of my mind, though.
The next day, we did the CCHD (Critical Congenital Heard Defect) screening, and she failed it by just 2%. This is when reality really started to sink in. Something was wrong with my baby. She was not ok and we didn't know what the issue was, or why. However, we did agree she looked like she could have Down Syndrome, in spite of only having one or two obvious markers. The only thing we could do was make an appointment to see a doctor the next morning and pray. I sure did a lot of praying that night, as I held her close to me all night long and tried so hard to surrender her to Jesus. This word "surrender" is what God had kept bringing to mind throughout this entire pregnancy and birth. And now here I was, trying to surrender my 48-hour-old baby to Him. Not knowing how serious her heart issue was, I had no other choice but to place her in God's hands. It was probably the greatest heartache I have ever felt. I couldn't fix this, and it crushed me.
When we took her to the doctor, he immediately ordered an ECG for her heart and a chromosome test because in his words, she appeared "syndromic". They also checked her bilirubin because she was pretty jaundiced. This little one just didn't have enough blood for all these tests. They were able to get enough to check bilirubin, but nothing else. They thought she might have to be hospitalized under the lights, but praise God, she was just under the limit when the bloodwork came back and they did not want to admit her. We were able to manage it at home and it improved very quickly. We still have yet to do the chromosome test, as it requires a lot of blood for a tiny baby and it's really not urgent to get that diagnosis.
She had the ECG the next morning. I was sitting in the ultrasound room with her, holding her on the table and thinking about how an ultrasound of your baby is supposed to be a fun, happy thing. And she's supposed to be inside you. But now I was holding my 3-day-old, a tech was taking pictures of her heart for over an hour, and all I could do was pray that He would hold us both. I believe He was, and IS, holding us. I'll take this opportunity to share a side note. In March, I attended a women's conference. The theme was Psalm 23. The conference started with one of the speakers walking out on stage, holding a lamb. She talked about how Jesus is the Good Shepherd and He is holding us in His arms. We are safe and have nothing to fear. I can't even tell you how many times in the past few weeks I have envisioned myself as a lamb in the arms of the Good Shepherd. During my difficult birth, when we got scary news about Eliyanah, when I sat with her in the ultrasound room, and so many times since then.
By the end of that day, we got some encouraging news about her ECG. We learned that there were two holes in her heart that the cardiologist expects will close on their own. We are just going to follow up with him in 4-6 months. This was the best possible news we could have hoped for. It was nice to be able to breathe a small sigh of relief and know she isn't in immediate danger. I have since learned that the two holes are the normal ones that every baby has at birth, and sometimes they just don't close right away. She has no actual heart defects, even though Down Syndrome can be associated with several types of more severe defects. God had answered my prayer before I even asked!
The following week, we went back to the doctor to redo her Newborn Screening, as it had been rejected because of the lack of blood (this was no surprise to us, she really had so little!). The nurse noticed how much better her color was, and that she "looked like a different baby". This was encouraging to me, but I also learned that she had not gained much weight, so I became hyper focused on getting her to eat more. Thus began my journey of nursing, pumping, bottle feeding, and repeating, for nearly two weeks (and still going). It has been so hard but so worth it, as we are steadily seeing gains and she is finally starting to fill out newborn clothes. It will be a while before she outgrows them, but thankfully a few friends had blessed us with newborn clothes (that I thought we'd never use because, you know, I have big babies! lol).
Three days after this, we learned that Eliyanah's Newborn Screening (NBS) was normal. North Dakota tests for 49 different genetic conditions, some that can be related to Down Syndrome. So this has given us a lot of peace of mind as well. She will go back in 2 weeks to the audiologist for a newborn hearing screening, and then the following week we will finally be ready to do her chromosome test. She will be about 5-6 weeks by then and we will be a lot more comfortable with them taking that much blood!
So that kind of catches us up to the present. Life has been a whirlwind of trying to navigate normal newborn exhaustion, with all of the extra things that she is dealing with. I will admit, I have been on a roller coaster of emotions. From realizing at less than 24 hours old that my baby was showing signs of Down Syndrome, to learning there was a heart issue, to keeping up with feeding her, all while severely sleep deprived myself and dealing with postpartum hormones (let me tell you, those are no joke!), I have not been the best version of myself most of the time. I have cried until I couldn't cry anymore. I have had moments of peace and acceptance, moments of fear and anxiety, moments of joy and gratitude. It's a rough cycle and I'm admitting this now because while I do absolutely and whole-heartedly believe what I say I believe, this has been something I never wanted to face. It's something no parent wants to face. And yet here we are. I could choose to believe the lies, that it was the result of getting pregnant at 40 (however many examples there are of women having DS babies at a young age), that I did something wrong, that this is just impossibly hard. I COULD believe those lies, but where would they get me? Or, I could believe what I know to be true. That God is good, He uses all circumstances in our lives for our good and His glory, that the the moments of the greatest pain is when He is nearest, and when we grow the most. Oh, how I'd like to believe that life was supposed to be easy! But I say all the time that God is good even when our circumstances do not feel good. And while I'm in the midst of that right now, I choose to live out my faith. I choose to believe God is good and is working this situation out for an amazing purpose. Eliyanah's name means "God has answered". How can I deny that this is God's will for our family? Of course this is His good and perfect will, and she is a good and perfect gift from above. The Lord knew her before she was even formed. Nothing was a surprise to Him. Her existence, and every little detail of her life was planned out before even one of them happened. This is straight from the Bible. I rely on what is true to carry me when I feel like I am falling apart. I am not angry at God or asking Him, "Why me?" I will admit I have felt like asking that at times, but deep down in my soul, I know the answer is that God sent this sweet angel to teach us something incredible. To grow us in ways we never thought possible. To experience the depths of his mercy and grace that we never would have experienced otherwise. To feel more alive than we ever have before. Because those things have already happened and it's only been 3 weeks. Just imagine what the future holds! More scary moments? It might. More victories? Most certainly. More opportunities to grow closer to Jesus? Absolutely. I have no idea what the future holds for ANY of my children. I can't guarantee their safety and health any more than I can my own. All I can do is intentionally build into them every day and point them to Jesus over and over. If they know Him, if they follow Him, then that is all the safety they will ever need. More than enough.
Back to that word, "Surrender". Every time I think I know why God wants me to learn the meaning of the word, He gives me even more to learn. It has been hard. Sometimes I have asked Him for a break from all the lessons. But surrendering is what I need to do. It's what I must do. It's the only way to have peace. True, lasting, overwhelming peace. So I guess I will be learning how to surrender many more times throughout my life, and especially through our sweet baby girl.
I want to leave you with a list of all the blessings that we have noticed thus far. There are a lot of miracles that God has already done and I am sure there will be more.
1) I had a healthy pregnancy and normal delivery. If you look up "short umbilical cord", you will see all the risk factors associated with them. Apart from her smaller size and my long labor, I had none of them.
2) I was able to still have a home birth. If I had known these things ahead of time, I would have felt pressured to have her in the hospital. From everything I've read and experienced with my babies, a woman is so much safer laboring where she is comfortable. I am far more comfortable at home than at a hospital. I know not everyone can relate to this, and that's ok. But for me, home is what I needed. We were in very good hands with my midwife. I never felt unsafe, even when I knew this labor was different.
3) Eliyanah has no serious heart issues! I think that one is self-explanatory! On that same note, she does not have ALL the markers of Down Syndrome. She has very good muscle tone, incredibly strong. She has been lifting her head up off our shoulders/chests since the day she was born. She is always wiggling and looking around. She was full term and was an average size (just not average for me). There are so many babies like her who are in the NICU, extremely tiny and struggling to eat. We are in awe of God and so grateful.
4) We have an unbelievable support system. Our church family provided meals for us for almost 2 weeks straight. They threw us a shower a week before she was born and it was so uplifting and full of love. I felt all the prayers both here in ND and all over the country. Our NH support system is strong as well, even across the miles. I have felt so loved and really held both by Jesus and by all of those who knew what was going on.
5) I have Derrick and our other four amazing children. They are all incredible. They have been taking care of everything while I recover and focus on Eliyanah. There has been very little complaining about added chores and responsibilities. I would say almost zero complaining. 😉They love her and they love me and are devoted to supporting us both. I am so blessed.
6) The kids are about done with school for the year so they aren't falling behind in their work. Chloe is the only one with a little bit left to do. Derrick has 5 more days left of school and then he will be home doing this with me 24/7 all summer!
7) God has been so near. This is no surprise to those who have walked through difficult times, but it is still the biggest blessing of all. When my mind gets carried away with fears and questions about the future, He quiets my heart and tells me that He is taking care of tomorrow. When the tears come like a waterfall because things are so very different from what we expected, He surrounds me and reminds me that He has a perfect plan and works all things together for good. He reminds me that our family was born out of the worst kind of tragedy imaginable, and that so much joy and beauty has come through unspeakable pain and grief. He whispers that even though everything in my life seems to have changed in the blink of an eye, it was all part of His perfect plan and He is still the same God. He has not changed, nor will He ever change. And different doesn't mean bad. Different can be good. It can even be great, if I am willing to trust Him completely!
This was very VERY long. If you made it this far, thank you for reading! I will be adding a lot more to this in the future. I am really doing it more for my own mental health, but if it benefits anyone else to read my thoughts as we journey through this chapter, I'm happy to share it with you all.
Thank You Jesus for our precious Eliyanah Eden!
