Building our family through adoption

Story

Hello, My name is Shaeli Kockelman; this is very hard for me to do but I don’t know what else to do… And it would mean everything to me and my husband if you would take a few minutes to read our story. My husband (Sean) and I are wanting to grow our family, and we keep getting our hearts broken. In January 2019 we lost our son, Rowan Everett and in June 2020 we lost our daughter, Nora Reed.We found out we were pregnant with our son on August 24th 2018. I was constantly sick with nausea and vomiting, other than that I was so happy and elated to finally start our family. Around 18-20 weeks I started having horrible pain on my left side under my ribs. I went to the emergency room in the middle of the night because the pain woke me up, we were there until early morning and were discharged with acid reflux. I wasn’t satisfied with this answer but had nothing else to base my experience off of. I saw my doctor at 24 weeks and explained my pain again because it hadn’t stopped, she felt that it was also acid reflux and I was having muscle spasms because my body was trying to stop the reflux from coming up. Again, wasn’t super thrilled but didn’t know what else to do. A few days later we were back in the emergency room… I started in labor and delivery and then they decided it wasn’t pregnancy related so I was moved to the regular emergency room. I was in excruciating pain at this point and my blood pressure was through the roof, 212/140, I was lucky to still be conscious. I was given Oxycodone for my pain and it still wasn’t managed, they added Morphine and it got better, and my blood pressure dropped slightly. I was given an ultrasound on my gallbladder but it came back perfect. I was doing my own research in the ER as everything was happening and asked if they were considering HELLP syndrome, they said they were continuing to run tests and were consulting with the on call OB physician. They quickly made the decision that I wasn’t able to be cared for in Rice Lake anymore and I’d need to be transferred to Marshfield. The doctor came in and stated that I wasn’t safe were I was at and our baby would need to come soon but it couldn’t happen at that hospital; I was given a steroid injection to help Rowan’s lungs develop while we were waiting to see what would happen. At this point we were at eight hours in the emergency room and the ambulance transfer was another two hour drive, we arrived in Marshfield around 1AM. Once we were in Marshfield my mom asked when we would be released, they said not until I had the baby. This was a true shock, I was anticipating that I would be stabilized and sent home within a day or two. We went to sleep for a couple hours, I was woke up at 6AM for another blood draw, they came back in at 7AM and said a c-section was happening today and they were getting things in order to have it done as soon as possible. They confirmed it was HELLP syndrome, and I was experiencing organ failure, specifically in my liver, and it couldn’t wait another day.This is where I start to get fuzzy and Sean has a better grasp on what happened. I was on so many pain meds, I was also on magnesium to prevent strokes, and with my body failing I just couldn’t fully comprehend what was happening. They sent in a NICU doctor to do an ultrasound and see how the baby was doing through all of this. And this is where our hearts shattered, we found out that even though I was 25 weeks pregnant our little man was lagging behind at 20 weeks and his viability was very low, less than 1%. They explained that if he was born alive they may not be able to assist with a breathing tube because they weren’t sure if their equipment would go that small. We made the decision to have life saving measures put in place, anything to keep our son with us. At this point a lot of my family were on their way to see us but, I made a phone call to my cousin and cried saying I was scared because there was a possibility they would take the baby and I’d be placed in ICU unable to see him, a lot of things were unknown because of our conditions and the hospital was on restrictions due to flu season so family was limited. We went in to surgery at 11AM and our beautiful boy made his entrance at 11:34AM on January 18 2019, I wasn’t given full anesthesia for the surgery but I could hardly stay awake, I would hear a few things and then fade out again. I distinctly remember them saying he was born and closing my eyes, when I woke up Sean was gone and I closed my eyes again, when I woke up again, Sean was back, I asked how Rowan was, he said he was doing ok, they placed the breathing tub and had x-ray coming down to make sure it was in the correct place. Rowan was a mere 10oz and 10 inches, but he fought so hard. The doctors were amazed by him and cautioned us that even though he was doing well, this was called “honey mooning” and he could decline very quickly. Friday night I was able to see him after they had him all set in the NICU, he did very well, I was so proud, exhausted but beaming and NOT in the ICU. Many family members were able to give me a brief hug and a quick goodbye once I was also stable. We carried on to Saturday. My parents came back and we visited, they were able to see Rowan, and we had a good day. Sean was a rock star, taking care of me, my breastmilk, managing family and phone calls, and spending as much time in the NICU as possible. Sunday, it all hit the fan! And it was a rollercoaster. I woke up, pumped, and watched him on his NICU camera that we could log into, I even walked myself to the NICU to drop off my milk and they said he was still doing pretty well. I got to change his diaper and swab his mouth (absolutely terrifying on something that tiny, I thought I was going to disrupt all of his wires or break him, he was so fragile and his skin was so thin and quick to tear). We were having a good time chatting with my mom and Sean’s dad came to visit as well. A little later in the afternoon we got a call that we needed to be in the NICU right now! I took off, two days post c-section, I couldn’t believe how fast I moved and it didn’t even hurt, I just knew I needed to be with my baby. When we got to his station, there were so many people I couldn’t wrap my head around what was happening. They told us he was starting to decline, his kidneys were failing, he was losing weight (which was horrible he was only 10oz!), and his breathing was declining and they were scared to continue using the respirator; if they continued to turn it up his lungs could burst and that would cause his death. They asked what we wanted to do, Sean and I looked at each other across his incubator and we knew we would do anything. We told the doctors, do all of it, whatever it takes! They sent down x-ray to check his lungs and ultrasound to scan his brain. As parents, there was nothing we could do but watch, every few minutes we would go up to Rowan’s incubator and grab his hand and just stare at him while we wept. X-ray came back and both lungs were filled with fluid and his brain was bleeding on both sides, all we could do was pray. I was still beyond exhausted and was falling asleep in the NICU, I decided to return to our room since there was nothing I could do; one of my biggest regrets, I left my baby boy, my love, during the last few moments of his life… I cried to my mom in my room, because I couldn’t be in the NICU I was physically unable to keep myself awake and coherent enough to grasp the situation, she said that’s what being a mom was, being scared and unable to help your child, sometimes it happens and it’s devastating; she was right, being able to do nothing with a child so desperately in need destroys you. I fell asleep. Sean’s dad came running into the room saying we needed to get back to the NICU. By the time I was in my wheelchair and my mom ran me down there they were doing chest compressions, his heart had stopped. I just stared as they kept trying to bring my baby back, and they would for a few seconds but he just couldn’t hold on anymore. We decided to tell them to stop, it was an awful thing to watch my baby receive chest compressions, and it killed a piece of me to tell them to stop. We held him and he passed away shortly after at 3:14PM on January 20, 2019. The hospital was amazing, they let anyone come and see him, and let us stay in the NICU as long as we wanted, brought us a beverage cart and food. We stayed and just stared at him, everyone took their turn holding him, and slowly we all left once we said goodbye to him.As awful as our situation was, I am a little thankful it took me awhile to recover, I got to spend a week with my baby boy even though he was no longer present on this earth. I continued to be hospitalized because my blood pressure was unable to be controlled. I kept Rowan with me, they had a beautiful basket we could keep him in that kept him cool so it was safe for him to be with us. I stayed in the hospital for a week, so many tests, and I was demanding answers as to why this happened. My placenta was small but the tests came back normal, the doctors were confused. My specialist wanted me tested for antiphospholipid antibody syndrome. It is an autoimmune blood disorder, it causes your body to attack the fat in red blood cells and cause abnormal clotting. It is fairly harmless, I lived 24 years with no issues. My doctor stated it’s rare to be diagnosed because it’s not often discovered unless women are struggling to get pregnant or keep experiencing losses for no reason. In pregnant women, it effects the placenta causing clots, in return causing high blood pressure, and what caused my HELLP syndrome development. The annoying part is, the test is two parts and takes 12 weeks, but it was our last option to figure out what happened. I was able to take the first test in the beginning of March because you have to be six or more week’s post-partum so the pregnancy hormones are out of the body. It took about a week for the test to come back, it was positive! This provided some hope but I had to wait another six weeks to test again; the test can produce false positives if you are feeling ill or battling an infection, so two positives it what it takes for diagnosis. So, June came and I went back in for another test, a week goes by. YES! Positive again! I remember so vividly hanging up the phone and hugging my mom while I cried, I had my answer, and I was so thankful. I called Sean and let him know, it was like a weight had been lifted. We can get pregnant again in a year and this can be managed! Yes, yes, yes. We very impatiently waited a year to try again. On January 31 2020, in true Wisconsin fashion, we decided to go out for Friday fish fry. I had a feeling so right as we were leaving the house I said just wait, I’m going to go take a test before I have a beer with dinner. We waited for the longest two minutes ever, we had a positive test! Sean and I cried together, I mean we were trying but it was still a shock. We happily left for dinner, Sean had his beer and I had a soda. That Sunday was Super Bowl Sunday and we met family at a bar to watch. My mom asked what I was drinking and I just ignored her, she asked again and said I couldn’t decide, she preceded to bug me and asked why I was being so weird, I said I’ll have a water, I’m pregnant. She was shocked, she cried and hugged me, I said be quiet, I’m seeing the doctor on Monday.We had our first appointment a few weeks later with our regular OB. Everything seemed well and we had the first little pictures of our nugget. After a couple weeks I had to start on blood thinner injections and aspirin to help with the antiphospholipid antibody syndrome. It was painful, and I was covered in bruises, but whatever it took, I was happy to do! We were also under the care of a maternal fetal medicine specialist, the one who saw me during my hospital stay with Rowan. He was a great doctor and had earned our trust. We drove to Marshfield for a 14 week appointment, we have so much anxiety visiting their but we were hopeful and it was the only place to see our specialist. As we went into the ultrasound and watched our daughter bounce around we were so happy, we finished and the tech said she’d review with the doctor and come back. We waited for what seemed like forever, our doctor came back. This was the first time we saw an issue, he explained he saw that the brain had not divided properly and the nasal bone appeared to be absent. He was very concerned and offered abortion. The answer was a hard and fast no. We started preparing for the worst but hoping for the best, saying so many prayers, and trying to will it into existence that our baby was fine.We continued to go back every week for two weeks and then every two weeks. Same concerns every time, but a beautifully active little girl was in my tummy. The doctor said it was called semi-lobar holoprosencephaly, it was something she could survive but would most likely have seizures, a feeding tube, and developmental and physical delays. That was ok with me, anything to hold her and have her be happy. They were fairly positive she had Trisomy 13 and ordered genetic testing. Over a total of six weeks, we had three genetic tests, one we tried twice with no success due to insufficient fetal DNA, and the second test was able to provide answers. The test came back very unlikely to have any sort of Trisomy, 13, 18, or 21. We were elated, yes! A win! We are bringing baby home!At week 18 I received a call that they would like to schedule another ultrasound (not surprised) and have a consult with a pediatric cardiologist (very surprised). I asked why that was ordered and they said it was standard for a baby showing any signs of holoprosencephaly because it is also common for them to have heart conditions. I could handle that, precautions are good and we had no current concerns regarding her heart, it seemed to be working well and was displaying all four chambers. At this point we knew she was measuring a week behind but our doctor said unless it was two weeks or more we were within normal range. So, we head to Marshfield again, but we were hopeful because we had no concerns with her heart thus far. We do our ultrasound as usual, our doctor comes in, and asks to join him in his consult room. Crap, this is not good, at all. He explained that there were significant problems with her heart. He explained there were three holes, possibly a fourth and one of the valves wasn’t working properly. He spent a few moments with us and then we met the cardiologist. She went into more detail. She explained that the holes could possibly close, but the one they were most concerned about was not something that could fix due to placement. The other issue, her valve, was regurgitating blood back into the chamber and not sending it through her body. This was a contributing factor to her stunted growth, which now reached two weeks behind. The cardiologist said this was fatal, she apologized as she told us this, and as we sat and listened and cried, she also cried. It was a painful appointment but I will never forget our interaction with her, she was so gentle and vulnerable. We were told to enjoy the remained of the pregnancy but they were unsure of how much longer I had left, I was 22 weeks pregnant, this was a Monday. Friday, I wasn’t feeling her move as much as usual, I saw my regular OB, she explained that this was normal and to be expected with how hard her heart was working. But I heard her heartbeat and knew she was still safe in my tummy.Late Sunday night/early Monday morning I woke up, honestly thought I had wet the bed. So I got up and took care of myself. It happened a couple more times, annoying, but I was over halfway through my pregnancy and my children enjoyed using my bladder as a boxing bag. Eventually it was just time to get up and go to work. And then it happened again. I messaged my family members to see if they had their water break and what it felt like. They felt concerned so I saw my doctor. She noticed that I had some fluid leaking so she took a sample but said that my fluid levels looked good. I went back to work and waited for an hour and a half to get my results. Sure enough, my water had broken, 23 weeks. She said she had consulted my specialist and they would see me the next day. She recommended deciding what to as soon as possible, and she would allow me to deliver in Rice Lake if I was comfortable but she didn’t recommend going over 24 hours with my water leaking. Sean and I decided that going to Marshfield was our safest option. We packed Monday night and took off Tuesday morning.We got to Marshfield and had our usual ultrasound and met with our doctor. He said that I had lost over half of my fluids. We were given three options, let labor continue but be induced to speed things up, have another c-section, or continue the pregnancy. All came with nerve wracking risks. Induction- I get to finally have a vaginal birth but risk uterine rupture, having blood transfusions, and a hysterectomy. No more pregnancies. C-section, bleeding is still a risk, uterine rupture drops severely. Continue pregnancy, most likely have a stillbirth and develop infections. Sean and I couldn’t decide what to do and ask if my mom could join us, he said that was ok and he would give us 15 minutes to continue thinking about our decision. We opted for a c-section, we could try to have another child, and we had experienced it before, we felt safe. We were sent to labor and delivery and began the wait. Due to COVID my mom had to part ways with us, and my dad was on his way. The nurse supervisor met with us and understood our circumstance and once Nora made her arrival my parents were able to join us. Her arrival took longer than expected. It was scheduled for 4PM, but it was pushed to 5PM, and then to 6PM. The wait was awful, I was tested for COVID, extremely uncomfortable, and I couldn’t eat or drink and it had been almost 12 hours at that point. I cried while we waited, I felt like I had a rock in my chest, there was no right choice to make… I could feel her moving inside me, happy and active, and I was choosing to end it. I felt like I was robbing her of her chance to live, I was cutting her life short, but I knew no matter what, she wasn’t coming home.After two delays we finally went into surgery and Nora joined us at 6:34PM on June 16 2020, another tiny nugget 10 inches, 12oz. We choose not to have any life saving measures and we would spend her life together doing skin to skin bonding. It was so wonderful, she had the deformities they were concerned about, she was missing her nose and had a severe cleft palate. She also had an extra thumb that we were unaware of, but she was beautiful and perfect. We spent her whole life with her, me, Sean, my mom, and dad. She stayed with us for just shy of three hours. It was the best, she went very peacefully lying on my chest. The hospital was very nice and again allowed her stay with us until I was discharged, they also allowed visitors even though they were under restriction. We needed answers again, what happened with Nora wasn’t the same as with Rowan. The first time my body failed me and the second time Nora’s body failed her. Again, my placenta testing came back normal (not surprised we figured it would), so we sent the placenta to pathology to extra Nora’s DNA and figure out what happened. It took a very long six weeks but we finally heard back, and it was more complicated than I anticipated. She had multiple duplications of chromosome 1, I won’t get too deep into it because I hardly understand, but they said it was in a mosaic pattern, meaning it most likely happened as horrid luck and was not inherited. We were given the option for myself and Sean to be tested. If we carry the gene recessively, we will continue to struggle to have a viable pregnancy and live birth. As of today 08/05/2020 our insurance does not cover the testing, but we are fighting it. As everything was happening with Nora we were exploring adoption. Our dream is a family and we’d love to create that between Sean and me but we also know there are children that need food, a home, and so much love. We were accepted by an amazing agency but the fees are required up front, $20,000. In addition to the $20,000, we would need an additional $10,000 to cover expenses for the mother and travel/legal fees. We tried a loan company through the agency and two banks in our area but were unable to get a loan. So many people have asked what they could do for Sean and I, this is it, help us build our family. We are so excited to start our family but the financial hurdle is more than we had anticipated. We’ve been surrounded by so many loving people that are family, friends, and people we don’t know. We have broken hearts, empty arms, and an empty nursery. Anything to help us complete our family is beyond appreciated.Thank you for sticking with us and giving us so much love. We love all of you!