My Story with our Daughter in the Hospital

 Hello again! It has been awhile since I have written anything and I want to start doing it more! However, this one is a little different. Since February of this past year, I have been in a whirlwind of fear and anxiety. Many of you may have heard about my daughter Eva being hospitalized after she was born in February, but do not know what really transpired during that time. I have debated whether or not I wanted to write about it at all, but I have been encouraged by many to share my experience, as painful and even controversial as it was. Writing has always been a way for me to express my thoughts and even process my experiences.

This story really starts before Eva was even born. Throughout my pregnancy, I had so much fear that something was going to be wrong with her and that I would not have the experience I wanted. Leading up to our 20 week ultrasound I was ridden with anxiety, and even after we got normal results back I was still so worried. In the third trimester I began to feel a lot of peace and God put on my heart 2 songs that I began listening to on repeat: "Stand in Your Love" and "Breakthrough Miracle Power". Little did I know God was preparing me for what was to come.

On Valentines Day night, my water broke and the nerves kicked in! My plan was to have a homebirth, but that did not end up happening and I transferred to the hospital where she was born on February 16. So much had not gone as I had planned, but I was so thankful she was born with no complications. She was the most beautiful little girl and it was truly the most incredible experience holding her for the first time!

The day after we got home we received a call from the hospital that one of the tests on her newborn screen came back positive and we needed to go to Blank or Iowa City so they could collect a blood sample to send off for further testing. I was not nervous at this point because I did not know what this result meant, so we loaded up and my husband Jack's parents drove us to Blank hospital. I am not going to go into a lot of detail on some things, but they had drawn her blood and began trying to explain to us what Tyrosinema Type 1 was and what that could mean for her life. None of the doctors gave us clear answers and we became more confused as the hours went by. The blood test would take 1 week to confirm whether or not she was truly positive, so to me, I did not see a reason why we could not go home. Then they said her blood was not clotting well and wanted to keep her overnight to monitor. My first thought was that this was not a big deal considering we had declined the vitamin K shot so this was probably a normal baby's blood result without that.  After a lot of back and forth we decided to stay the night, but when we got up to the NICU floor, a doctor sat us down and read from a sheet of paper telling us our daughter without a doubt had Tyrosinemia Type 1, my breastmilk was going to kill her and she would probably die. There was not an ounce of empathy in his voice and we were left completely defeated and confused. We were sent up to the NICU to monitor her blood levels is what we were told, but we realized we were tricked. We were going to be transferred to Iowa City in the morning to a specialist and they were going to make my daughter starve for 12+ hours until we got there and then start her on a special formula.

As I write this I feel my blood starting to boil again...I really can't even begin to put into words what I was feeling at that point. I was 2 days postpartum, barely able to walk and my milk had just come in. I felt completely alone and defeated. As I sat there through the night next to my newborn baby being poked and prodded over and over and over again, I began to shake uncontrollably and my spirit knew what I needed to do. The whole situation felt wrong from the very beginning. I knew there was absolutely NOTHING wrong with my baby, I can't describe that feeling but I just knew. All through the night I was texting with my brother who became my rock throughout the entire journey, and in the early morning I woke Jack up and told him I cannot sit there and watch my daughter become more lifeless by the second. She was starving and so limp she could barely move. We decided we were going to tell them we would like to sign an AMA and leave to seek a second opinion, and I took my daughter off of that bed and fed her. The fear I felt as Jack shielded me from the nurses seeing us was indescribable. The doctor who had spoken with us that night came back and Jack had the difficult conversation with him that we were leaving. I don't know what I was expecting but it was worse than I could have ever imagined. The doctor began yelling at my husband, pointing fingers in his chest and calling him a terrible, negligent father and we had no room to question him because he was an expert and we knew nothing. At that moment I wished I was dead, I felt the most immense fear like I was in a prison, but my husband did not back down and he signed the AMA form.

As the day went by we got suspicious because it was taking so long for us to leave, and a few hours later we found out why, when CPS came walking through the door. This moment is without a doubt one of the most painful moments to relive in my mind. As I sat there clinging to my precious swaddled baby, we were told if we did not follow the advice of the doctor, they would take my baby away from me. They said because I was a newly postpartum mom I was clearly out of my mind and had no right to question a doctor...when in reality all we were doing was advocating for her and asking questions. A lot more was said that doesn't need to be spoken again, but long story short, we were forced to do whatever we were told without question and transferred to Iowa City. There we were told my milk was not killing her, which I already knew, but we would need to use the special formula in between feeds. My mom and I stayed with Eva 24/7 and at night we each took an hour or 2 to sleep, but I did not sleep for 5 days straight from all the stress. Eventually we were moved up to a big room out of the NICU.  A lot of the details during this time have become fuzzy due to the stress, but a few days later we got the go ahead to go home and await the Tyrosinemia Test results. Just as we were about to be discharged I noticed Eva not using her left arm as much and told one of the doctors. We then decided to wait another day to run some tests, which included an MRI under sedation and xrays. Later that night 2 doctors came in at midnight to inform us Eva had a fever all day and needed a spinal tap to check for meningitis, but we later found out she had MSSA bacteria in her left shoulder and it had abscessed resulting in her needing immediate surgery. 

Eva had surgery that night and was so strong, and as the days went by she slowly started to move her left arm which was such a relief, but our fight for her was not over. We would need to stay there to run antibiotics for 4 to 6 more weeks. After some processing and asking how she could get such an aggressive infection, I knew in my heart Blank hospital infected her because of all the unnecessary needle pokes. Even Iowa City was appalled at the state she was in and the bruising all over her. 

During the process of us fighting for answers on her Tyrosinema diagnosis, we pushed for a DNA analysis to be sent off, and this result would take 2 weeks. It would tell us with 100% certainty if she had it or not. While we waited for those results, every doctor who was on rotation tried to push us to give Eva the formula for babies with Tyrosinemia in addition to breastfeeding, even though Eva would projectile puke every time we gave it to her. One night in particular, a doctor came in the middle of the night waking my husband up and telling him she needed an NG tube, to which he sternly said no. Even though we were on eggshells trying not to upset anyone so Eva would not get taken from us, we had to fight for her. 

We were on the final stretch of our stay and each day got harder and harder to stay positive and keep going. Jack was coming up on the weekends since he had to go back to work and mom was trying to hold me together so I could take care of Eva. I had prayed and prayed and prayed, with no comfort or answers. I was so mad at God and eventually gave up prayer. But the day came that I will never forget. I was at Old Navy with my sister Lizzy on the one day I left the hospital while mom watched Eva, and mom called to tell me there was a doctor coming in that needed to talk to me. Immediately my stomach dropped and I rushed back, expecting more bad news that I knew I couldn't bear to hear anymore. As I opened our room door I saw the specialist sitting across from mom and she got up and handed me a piece of paper. As I began to read I saw the bold letters DNA results negative for Tyrosinema and immediately started to cry. It was the news I knew in my heart was true from the very beginning, but I did not think I would ever see those words. They stopped the medication and formula, and there were two doctors who came in and apologized to us for assuming she had it and pushing extreme scenarios on us. 

Once we had finished up the antibiotics, we were finally discharged and as we walked out those doors, it was such a surreal experience. We never thought were going to be able to leave! Once we were home, it was a very difficult transition. We had to adjust to being home with our baby for the first time, and also were so hurt and traumatized from the past 6 weeks. We also had to do phone calls with the CPS worker and finally got the letter in the mail that our case was unfounded, but the anger towards them still to this day overflows. 

As I write this, we have been home for 8 months since this experience, and not a day goes by that I do not think about all that happened. I lost so much trust in the medical system (I do not have anything against doctors, we just got burned by the system and it will take some time to heal) and feel so protective of Eva. Anxiety about my daughter being taken away overwhelms my thoughts most days. 

But, God. My favorite thing my dad always says. If you would have said something about God in the last few months I would have smiled and thanked you for the prayers, but inside I was full of anger and resentment. HOW could God have put my daughter and us through that? Why did He not answer our prayers? Why did He abandon us? Why was He silent while I was crying out? I was constantly asking why, and pretty much walked away from my faith as I began trying to navigate getting back to normal life after all that had happened, but God pursued me. I went to our church and thought I would be overcome with emotions since I longed to be back, but all I felt was a wall of anger and felt emotionless. This continued on for months, as my husband and I slowly began to talk and try to process what we were going through. A couple months later one evening, I had a small breakthrough and sent up my first prayer to God in months, thanking him for keeping my daughter strong. I made the realization that I expected God to fix our situation and did not trust Him, even if His answer was no. I began to let go of my anger towards that one doctor at Blank and many others and knew that one day God will make all things right again. 

Fast forward again to where we are now, Eva is 9 months old, absolutely thriving, and I finally have some peace and a better perspective. Time does heal fresh wounds, and I have unpacked and deconstructed my view of what a follower of Jesus's life looks like. I realized that I unintentionally assumed if I was a Christian, my life would be easy and that God would never put me through anything like this. But of course, that is not true. When look at Jesus's disciples or anyone who followed Jesus in the bible, we see they clearly did not have an easy life, and they also did not follow Him perfectly. I took comfort in the verses that were cries out to God for help, because that was me. Our pastor spoke not too long ago about how God speaks in the silence, but we don't take the time to listen. We want to hear from Him and feel His presence but never take the time to read the living word or give Him the time of day. I was too busy being mad at God to listen and realize that sometimes God's answer is no, and He does not always deliver us from what we are going through. But if we put our trust in Him and know that even though I walk through the valley of the shadow of death, He is with me. He is not mad when I doubt or cry out in anger, He is the kind and gentle Father that desires to guide me through whatever trials arise. 

I don't have it all figured out and there are some days where I struggle and wrestle with the why, but I have found a new peace that only comes from God, and His grace is there for me always. God will allow you to go through trials, and we may never fully understand why. But I learned that my husband and I's faith was not built on a solid rock, it was built on sand. One thing my pastor told me that stuck, is that it's ok to be angry with God. Righteous anger is not wrong and those feelings are ok to have! Pour it out to Him, and in His faithfulness He will not stop pursuing you. One day all things will be made right and I may never know why He allowed this to happen to us, but I know that our hope is in Him, even in the dark times when all the lights are out. For now, I rest assured that Eva is in His hands, so I will daily cast all my anxieties to Him. 

As for our overall experience with the medical system, I wanted to raise awareness that you should advocate for your children and ask questions, even if you get push back. It is a scary thing to be threatened simply for asking questions, and doctors are just people who can make mistakes. So don't be afraid to question things, while also being carful.