At the beginning of each month Ella's Halo will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU. Ella's Halo created the Feature Family series, if you are interested in sharing your story, please email us at info@ellashalo.com to share your NICU story and to be a future Feature Family.
We have not met this family but know they understand all too well the NICU life and the journey of grief after losing a child. Their story tells about the difficult journey from starting a family, to rare diagnosis of a child , to a scary NICU stay, to ultimately losing your baby. The brave story Megan tells is what so many NICU families also face and Ella's Halo is happy to bring a little hope to their lives while in the NICU.
Bailey Gosiak
Written by Megan Gosiak
Former NICU Mommy
My husband and I fell in love back in high school, dated and talked about wedding plans until we were able to make them happen 5 years after meeting. We both knew we wanted to start a family as soon as possible, so we began trying to build our family 6 months after the wedding.
We found ourselves pregnant for the first time three short months after the honeymoon. We were so happy, we decided to shout it out to the world. Being only 4 weeks pregnant, we told my mom. We decided to tell my in laws the next day when we saw them, and would tell my father the next week at a special dinner we planned with him and my brother. We started wondering if things were ok the day after we told my in laws. My mother in law told me that major cramping was 100% normal, even though the cramping had been so intense, it woke me from a dead sleep. Not suspecting anything, we went about telling co-workers and other family that didn't know yet. Just 3 short days after finding out we were pregnant, I started bleeding. After calling the hospital, I put myself on bedrest until the appointment the next day. Scared but praying for the best, we went to bed hoping that we were going to be alright. The appointment came and we were pulled into a room and told "I'm sorry, your Hcg is a 3. For being 4w4d, your numbers should be much bigger. The baby is gone." I remember being so mad because they were holding us there and we just wanted OUT to go home and let it all sink in. We were in the maternity wing of the hospital and I was angry. Seeing all those big bellies and knowing mine wasn't going to end up like theirs. We raced home from the hospital and began the horrible process of untelling. The most heartbreaking people to untell were my husband's grandpa Florian and great aunt DeeDee. They had gotten SO excited about the idea of a new baby around.
We continued trying and hoping and praying. After 10 months with no luck, we sought out help and started talking to an ob/gyn and start testing to see what was wrong. We even started testing my hormone levels to make sure all was as it should be. I had to do cycle day 3 and cycle day 21 testing (3 days into your period and 3 days after ovulation) and they would work from there. I decided to skip the cd21 testing because I felt the whole cycle had been a waste and nothing was going to come of it. I had been charting and temping and doing everything I could think of to track everything. One day, I noticed something was different than the other times. Sure enough I tested and found we were expecting again. Eleven months after losing our first pregnancy, we were back in the game, hoping we would come out the other end with a healthy baby. When Adam came home from work, we had 4 different brands of tests and we wanted to make sure it wasn't just some fluke. We were blessed with an amazing pregnancy full of kicks, wiggles, and in the end were given a beautiful, healthy, energetic baby boy we gave the name Anthony (after a dear friend of my husband, who died in Iraq in 2005).
Just 6 days shy of his first birthday, we found we were pregnant again. We hadn't been trying, so this was coming as a blessing unasked for, but overwhelmingly welcome. We managed to hold off until our son's birthday to reveal to EVERYONE at once that Anthony was going to be a big brother. The whole room lit up and everyone was over the moon. It was an amazing day full of love, joy, and talk of miracles.
Everything was going along just fine until week 16 when we went in for a prenatal appointment and were offered a quad screen test. We couldn't remember if we had done one the first time around and figured can't hurt, let's go ahead and do it. It was like divine intervention in the end. We got a call back soon after the appointment and were told everything was fine, we were just inside the "normal" category. Feeling relieved, I was just about to call Adam and share the news when the nurse called back less than 20 minutes after the first time and told us that the dr had read the results wrong. We were outside the "normal" and were going to be referred to a different clinic for more testing (genetic counseling, level 2 ultrasounds, and the offer of genetic testing and an amnio). I started wondering what we had gotten ourselves into. Yes, these tests often gave false positives, but the "what if's" kept floating into our minds. Four weeks later, we were in getting the genetic counseling and a level 2 ultrasound. We were told that our numbers were fine for the neural tube defects and for spina bifida, but they were VERY high in the Down Syndrome area. We were hit by bricks. We knew that Down's comes with a big bag of its own, but we felt that as long as baby was as healthy as possible, we can do anything. During the ultrasound, we were talking to the tech and told her "we don't want to know boy or girl if we can help it" and sharing our story of how we had gotten where we were and our beautiful family. The tech went about measuring fingers, leg bones, the fold behind baby's neck, length of nose, and heart. We noticed that she was spending a LOT of time looking at the heart and kept checking and rechecking things. after a while, we asked what was going on and she told us that she saw something was wrong with baby's heart. She saw that there was something missing and it can be a very big problem. While waiting for her to talk to the perinatologist and get him in the room, our hearts started to sink. Surely we wouldn't be given a miracle like this only to lose it. Maybe she was mistaken. The perinaologist came in, picked up the transducer and began going over the heart area again. The whole room was very quiet as they pointed to this and that and talked to each other. The tone said it all. Baby was very VERY sick. Something was wrong. I started wondering what I had done wrong. Not enough of this, too much of that, everything. Wondering what was going to happen with the baby. Would it be born ok? Is the problem fixable? Would we have to say goodbye?
The perinatologist looked at us, got this look on his face I'll never forget, put his hand on my shoulder and told us "Your baby has a heart defect that is serious. If you look here, there should be something here to block the blood from mixing up here. And there is something wrong with the valves. We are going to have to keep monitoring you every month from here on out to keep an eye on it, but its not something that will fix itself. This will need open heart surgery soon after birth. I'm going to hand your case to a perinatal cardiologist who is amazing at his job. I'm so sorry" and then gave us an amazingly long medical term that I still remember to this day. AtrialVentricular Cushion Defect or AtrialVentricular Septal Defect. We were broken, but decided that we would do all we could to inform ourselves and keep faith that everything would be ok.
We did our regular appointments with our regular ob/gyn once a month and kept our monthly appointments with the perinatologist's office. Every 2 weeks, we were going to see drs and needed a babysitter to watch Anthony all the time. Every Wednesday that Adam had off was filled with drs offices. Around 32 weeks, we got to meet the perinatal cardiologist and talk to him about what our game plan should be. He said it looked like the ventricular part was starting to fix itself (YAY!) but we would have to assess everything after baby was born. Nothing was normal at all with this pregnancy anymore. On our way to an appointment, we narrowly missed a car that came flying out of the bushes, flew down the road, hit a light pole, and gave everyone around a huge scare. There was no such thing as a normal appointment either (impossibly long waits, lost appointments, missing this or that, miscommunications, drs not being available, you name it). We ended up switching ob offices because the hospital we planned to deliver at wasn't equipt to handle such a case and our regular dr was going to be out of town. Little did we know, this saved our little girl's life on her first day.
After a false alarm in week 37, we asked if we could put plans down for an induction because we needed to have the right people there and wanted to have things ready for when baby would be born. Our induction was planned for July 15th, bright and early. We'd be 39 weeks and the hospital would have the dr that we wanted on staff to deliver our bundle.
But Little One had different plans.
We got things finalized, Adam worked the schedule just right so that he wouldn't have to worry about the store that he manages, we had sitters for Anthony, and we had plans for what to pack the night before the induction. We were getting the last of our plans in place on the night of the 12th and Adam was putting Anthony to bed when the contractions were starting and something felt...different. Adam came out and I laid my head on his lap, looked up and said "Honey, I'm so sorry. I'm going to ruin your scheduling that you worked so hard on." He told me to just lay down, relax, drink more water, and keep breathing steady, we only had a few more days before the induction. Little did we both know, that night was going to be one of the most chaotic we could ever imagine.
I tried everything to stop the contractions. Drank obscene amounts of water, had my ankles up, took a warm bath, laid down in bed, everything, but nothing was working. I kept timing the contractions and noticed a scary pattern starting to develop. They were getting closer, stronger, longer lasting (piggy back contractions is a sign that labor isn't going to stop), and very consistent. I woke Adam and we hurried to pack a bag with everything we could need. This was hopefully it. On the way to my in law's house, we called (we left our apartment at 3am, and would be getting to their house around 3:45 ish) and called and called, but no one was answering. If you know my mother in law, she doesn't just let the phone ring. We were scared something was wrong on top of everything! Luckily it was just that Anthony had killed her cordless phone a few days before and she didn't hear the others ringing. She and Adam both saw that I was in a lot of pain, surely this meant that it wasn't going to be a false alarm again. We left her house at 4 am, got to the hospital at 5 am and were told to walk around and see what happens. When they checked me. Sure as it all could be, I had to be admitted. I was fully admitted and walking the halls at 5:30am. I got to a point soon after where the pain was too much and I didn't want to be far from the room, so I tried to just walk from the bathroom door to the bed and back. Soon, that got to be too much also. The birthing ball did nothing either. I had told myself that if I was going to do pain meds, I wanted the same kind I had last time. Its a one time shot in the back that only lasts about 30-45 minutes and can only be given once. I was getting along ok (truth be told I was in pure agony from contractions piggybacking so much that it was pretty much one long contraction for about 30 minutes) when I told them I needed pain meds NOW. They called the guy in and he got himself ready. The nurses wanted to check one last time and see how things had progressed and found I was at a 9. They said that there might be a while to go, but things were kicked into high gear, it was my call to get the meds or not. I told him to get things ready, I wanted the meds. Just as he ripped open the sterile package with the needle, I felt I needed to push. I told everyone "I gotta push!!" and the guy gathered his stuff and walked out as the nurses scrambled to get the dr in. Luckily, the dr we were going to be doing the induction with was on call that morning. We had lucked out! he came in, checked how things were and told me "You need to push? Then go ahead and push!"
Three pushes later at 7:52 am, I faintly remember him saying those precious words "Its a girl!" but I thought I was dreaming. There were tears all around. 8lbs 1 oz, 18 inches, beautiful full head of copper red hair. They put her on my chest and I noticed something wasn't right. She wasn't pink, she was blue. Very blue. I got to give her a kiss and tell her I loved her so much before they took her and put her in an isolette to see what was going on. They knew from the heart defect that she was going to have a low blood oxygen level (in the 80s), but no one expected to see it was in the very low 50s. They tried a few things to get her to start breathing, but nothing was working. They wrapped her up, gave her back to me for a few short minutes (more kisses, I love yous, and please get better), and then took her to the NICU. I turned to Adam and told him "Follow her! Come back to me with our little girl." As I turned to the nurse by my side, I asked what their policy was for the first night. Some hospitals won't let you keep your baby in room on night 1 while others let you choose. She gave me that "you don't know?" look and told me "She's going to be in the NICU for awhile. You can visit her in a bit."
I wasn't at all prepared for the NICU. Washing my hands for 5 minutes, being wheeled to her bedside and seeing Adam in his glory, loving his little girl and holding a pacifier in her mouth. I wasn't ready to see all the lines in and out of her body, the machines beeping around her, the nurses hovering over her and giving her this and that, looking at this machine, talking about that number, talking to drs about what to do next, I wasn't ready for any of it and they didn't want me in there long because I had just given birth without pain meds. I was exhausted. They rolled me back to the room, brought in a pump, and told me to eat and rest, I could go back in a bit, but I needed to rest for a bit first.
Fast forward a few hours, Adam came in and told me that she wasn't getting better, but they had sent him out to tell me this and to get some rest. We went to her side just in time to see them with our first clipboard and pen, drs getting ready to cut my poor baby girl open for the first time. They had to put in a chest tube to suck the air out of her chest as it was making it hard for her lungs and heart to fully inflate and get things going. We signed and then were asked to leave, someone would come get us when she stabilized.
She never did. We kept going back and often alternated who was by her side so that someone was always in the room for when family came by and we could bring them in to meet the newest member. I don't think they were prepared either. I had an amazing nurse by my side that helped with so much. When they went through treatment after treatment (cpap, oxygen on a ventilator, a jet ventilator, nitric oxide, medicines, etc) and things would start working for a little while, but wouldn't work for very long. The perinatology cardiologist was there to help lend a hand and it was soon ruled out that her heart was causing this, it was her lungs and something was VERY VERY wrong. They started talking about hospital transfers. I ran out of the NICU and back to my room to start packing. I'd be damned if I was stuck in his hospital while my daughter was 2 hours away, fighting for every breath. Luckily that amazing nurse told me "Get back to her bedside. I'm going to get a dr working on your release papers and us nurses are going to pack your stuff. You need to be by her side."
Less than 12 hours after being born, my daughter was being picked up by an ambulance, about to be transferred to the University of Minnesota Amplatz Hospital and I was given discharge papers with very strict orders for my own care. Things had gone so horribly and so fast. We barely had time to tell everyone what her name was (Bailey Diane) before they were talking about moving her. Once she was on her way, we got our things and started our own drive to the hospital in the Cities. No one could ride with because the ambulance was full with 3 nurses and tons of machines they needed to sustain her on her ride.
We got to the hospital around 9 and were put in a family lounge to wait for the drs to come in and tell us any news they had. We waited over an hour before Dr Bendel came in and gave us some scary news.
Bailey's heart had stopped before they reached the hospital. The amazing nurses did cpr for 10 minutes to keep her heart going until they could get it shocked back into rhythm. They didn't have a machine sucking the air out of her chest in the ambulance and her chest had filled with air, stopping her heart. They had to put in 2 more chest tubes and she was finally becoming more stable and even turning pink! They had a machine that would help with breathing issues (extracorporeal membrane oxygenation, or ECMO), but they weren't going to use it unless she started to decline again. We said our prayers, hoped and prayed that she would pull out of this, but the dr was back soon after she left and told us to come to her bedside, they needed to put her on the machines and it would be a little while after before we could see her again. We went in and were even more overwhelmed. More nurses, more machines, more tubes, more lines, more medicines, and now she also had a bright bruise on her chest from the cpr. Here was the body of my poor little girl, less than a day old, struggling for each breath, and about to undergo a major surgery. They did a quick baptism and we were asked to leave to keep the room sterile.
With the ECMO machine, cannulas are placed in the jugular and coratid vessels in her neck, one will pull the blood out of her body before it gets to her heart and lungs, oxygenate it, then returns it directly into her body to be pumped to where it needs to go in her body. It completely bypasses the heart and lungs. We were told that they had 3 weeks to figure out the problem and get it cured before the risks of her being on the machines outweighed the good.
We had to be put up in a room in the hospital because we came in so late. We barely got any sleep (it was cold, I was in a lot of pain and had no pain meds, and we were scared for our little girl). I started wondering if we were going to get to bring her home or if we would leave the hospital with empty arms. I tried to shove that idea out of my head, but it was always there in the back of my mind.
Days passed and we were put through the ringer. I managed to get a room at the Ronald McDonald House and was able to put all worried for myself behind me and focus on helping my little girl. She would start responding to this, but it wouldn't last. Her lungs started to look like they were opening, but that soon started to slow until it wasn't progressing at all. We even had a time when one of the cannulas slipped out of place and she was forced to breathe on her own for a little while, but they got things settled quickly. That was the night that they called my phone, but it was on the other side of the room and none of us heard it (the call was at 3 am and we were all exhausted). They only called that number and we had to correct that the next day, but luckily, nothing else happened that night. They had so many worries about our baby girl. There was the low oxygen levels she had the entire first day that caused minor brain bleeds and they worried about brain damage, there were worries about what was going on with her lungs. There was a worry about how her heart and its defect would cope with everything.
The end of week 2, the drs were starting to really scratch their heads and worry. Bailey was stable, but there was no change. They had tried to clamp her off of the ECMO (to see if she was ready to come off) and that didn't go well at all. Adam wasn't able to be by my side because he had to be back at work, but ended up coming down and was going to stay until they had a diagnosis and things were headed where they should. Poor Anthony was forced to cope with in impossibly small room to play in (with the most amazing Ella's Halo toys!) and a hectic schedule that had no room for play. The drs were starting to talk about the more rare lung problems. More than once, the words "not compatible with life" were said. I knew what it meant, but my brain refused to let the idea really sink in. There was no way they were saying she would die, they just weren't working hard enough and she was coming up on her final days for ECMO.
Friday, July 29th, they scheduled a lung biopsy (another major surgery, more bandages, more scars, more ugly marks on her beautiful body) and told us that they should have results back as soon as the next day, but maybe closer to next week. We had to have answers by Thursday August 4th. That was her last day she could be on ECMO without the risks becoming much more dangerous. It was a very anxious weekend that followed. They had to change out a bunch of parts on her ECMO circuit because they were starting to show signs of aging (it was amazing it lasted as long as it did) and her kidneys were starting to fail. She was bloating up and unable to drain it off. I asked one of the nurses what was going on with my little girl's chest? Why is it so shiny? and the response hit hard. "She's not peeing off the extra fluids anymore. The tissue in her skin is starting to break down, she's deteriorating." No. My little girl was supposed to live. She was a miracle!
Monday's rounds held more bad news. Her heart was starting to fail along with her kidneys and they expected the results from the biopsy to come in that day. My heart sank. I went to go pump and ended up texting my dad "If you are going to ever meet Bailey, you need to get up here now. Bailey is dying". My world was starting to cave in, but there was still a glimmer of hope.
Then the results came in. You know something is up when you are sat down in a room with 2 drs, all your primary care nurses, another nurse who cared for (and loved) Bailey, at least one nurse practitioner, and the social worker. The dr walked in and laid a sheet on the table. I barely caught a glimpse of the headline when he flipped it over, took a deep breath, sat down and said "I'm so sorry". Little beyond that mattered. My baby girl was dying. I was going to go home with empty arms, broken heart, and fractured family. I was losing another child, but this one I had gotten to carry longer and talk to. The dr went on to talk about the diagnosis (Alveolar Capillary Dysplasia), the chances (no cure, no treatment, extremely rare diagnosis), and the plan for the next few days. I don't know how Adam held together as long as he did because I could barely hold myself together once the dr came in the room.
Plans were made for us to stay the night in the hospital again while my in laws took Anthony back to the Ronald McDonald House for the night. We were told that we had all night to make memories with our little girl and one of our favorite nurses would be with her almost the whole night. She would only have her primaries for the remaining time.
I got to bathe her (her first and last bath), read to her, put a headband with a pink flower on it on her head, get hand prints, foot prints, and hundreds of pictures, and we were given the chance to dress her, but we opted not to because there is no moving of an ECMO baby unless necessary. That night, we both slept peacefully. We had exhausted all avenues, we had prayed all we could, been there as much as possible, and given all our strength, but it was coming time to say goodbye.
I have an amazing friend who was trained in Now I Lay Me Down To Sleep and she was able to come and take the last photos of that entire day. My dad did end up making it to meet Bailey and we had close family there to also say goodbye. My mom had gotten to come and meet Bailey, but had to go back home before any diagnosis was back.
That whole day plays in my mind often. Watching them do the final this and that, making plans for where we would do this and that, things were set up in a private room for us to have our time, and they prepared the final moments and got everything packed up for us so we wouldn't have to go back into that NICU room. The walk to the private room was rushed, but plays in slow motion. I hadn't held my little girl in nearly 3 weeks, but I had gotten to hold her first when she came into this world. Adam never got to hold her, so he got the honor of being the one to hold her as she passed. Sitting in the chair, them putting her in my arms, the shock on my face as I realized she was VERY heavy now, the machines breathing for her, her smell, the way she laid there and let us have our time, everything was so surreal. My baby girl could finally rest. She had put up a good, strong fight, but she was too beautiful to stay in this world. She had fulfilled her purpose in life and it was time for her to go back to Heaven and actually enjoy being a child.
Everyone said their goodbyes, I handed her to Adam, and he had his time to hold his baby girl. He didn't get much time before the nurses told us that her time was coming and it was coming fast. Everyone else was asked to leave and we were given a few short minutes before they pulled her tubes out and the nurses excused themselves. We were given a chance to say goodbye and let our little angel go back home. It was a very short time filled with tears, love, prayers, and finally peace as she stirred one last time, tried to lift her arms up, then slipped away. August 2, 2011 at 12:58pm, they pronounced her gone. 20 days old.
We noticed something later on when we were alone with the nurses, after everyone had left. While holding Bailey's body, we noticed the most beautiful sky, hardly any clouds, and the sun shining brightly. More than half the time we were there, it would rain and it would rain like CRAZY!
The wake came and went and many many people came to pay respects and see what an angel she had been. She had shown more courage and strength than I had ever seen. She taught us so much in such a small span of time. The day of her funeral, the skies were threatening, but there wasn't more than a very light sprinkle. During the service, the lights flickered and just about went out. Bailey always hated the lights on her isolette being on. She couldn't open her eyes if they were on, so the nurses often left them off for her. Adam and I just looked at each other as the lights flickered in the church. Bailey wanted the lights off, for crying out loud! After the service, our funeral director told us that it was POURING outside, it might be better to have the meal first then head out to the cemetery. We agreed and I think it worked out better that way. Anthony was given a chance to wake up and we had a little more time before we would endure the pain of letting go forever. After the meal, we went to the doors and found that not only had the rain let up, the clouds were clearing away and the sun was coming out. Adam and I smiled at each other again. Bailey was at peace, it was time.
We now go see her whenever we are in town and have a few minutes. We decorated her headstone to reflect her personality (bright, bold, and sassy) and she has gotten more gifts from people than I would ever have expected. We just decorated her plot for Easter today, in fact.
While many don't understand why, I feel a connection with that cemetery plot. I know her spirit isn't there anymore, but her body is. I carried that body for 38w5d. I gave birth to that body. I was the first to hold that body.
Its been 8 months since we said goodbye and life has returned to a whole new "normal". I have a caringbridge site for Bailey. Just type baileygosiak in the visit spot and it will take you there. I have a link on there also to another blog that I have recently started also. I am so thankful to everyone we met while in the hospital, to the people who donated this and that on behalf of their children passed, and Ella's Halo. From the toys to the outfit that is in her memory box to your amazing blog that shares NICU stories, Its amazing.
