Written on: 10/3/2015
A little over two years ago, I had a baby. And boy did it change my world. You may not know this, but I tried for four years to get pregnant with this baby. That part of my life was hard, so surely it couldn’t get any harder, right? She was here! But it did get harder. A lot harder.
I didn’t have much experience of what to expect as a new parent. Sure, my mom had a baby when I was nearly ten years old and I baby sat and played with him, but who remembers all that much about being ten, right? We were the first of our group of friends to have a baby. So, whatever came my way, I thought was normal. Well, mostly.
She came early, at 35 weeks. That was a shock! But the delivery went well (despite my hip dysplasia) thank goodness. It was actually a crazy delivery story, that includes 8 hours of on and off pushing and a doctor’s hand in my vagina turning my baby’s head, but that’s a story for another time. I was just so thrilled that I didn’t have to have a c-section and that she was here! She was alive.
She was tiny. Weighing in at 5lbs 14ozs. We got to stay in a room together. And then she got a little jaundice. They brought in a huge blue light to put her under. It took up our entire hospital room. Hubby had to crawl over my bed just to sit down. It was just jaundice though and we would both go home soon. Or so I thought. But then she started to lose too much weight and her heart started to beat too fast and she had really rapid breathing and it was time for me to be released and they wanted to keep her. I was sent home and my baby wasn’t. I was devastated. I never in a million years imagined walking into my baby’s nursery after having her, without her. I sat in the rocker in her room and I cried. Then, my husband drove me back to the hospital and I sat with her. I sat with her whenever I could. We drove there at 3am, at 4am, at 7am, at noon, at 2pm, and so on. We went a lot. They had a 3ft by 4ft room with one chair, one rocking chair, and enough room to push her cradle in and we sat there with her. She was too tiny to nurse. Her mouth couldn’t do it. When we weren’t there, they had an occupational therapist work with her on how to suck, swallow, and breathe. It’s a strange feeling to know this happened without us there. We asked a million times to meet them, to be there, they never came. One day we walked in and there was a feeding tube in her nose and taped to her face. I had been pumping milk at home and bringing it to the hospital, where the nurses finger fed it to her through a tube, or we did, but this day they said she wouldn’t drink enough. She wasn’t gaining enough. She had a heart monitor on. Her heart was beating too fast. Things got better though. It felt like she was there for a century, but we were lucky and got to bring her home after a week.
When we brought her home, the real craziness began. How do you feed a baby who can’t nurse? Well, I pumped milk while my mom and husband fed her with a plastic syringe and a tiny tube. It took two people to feed her, every 2 hours. Eventually (and I can’t remember exactly when) we got her to nurse. It was not fun. I had to use a nipple shield for 5 excruciating months.
A few weeks after she was born we noticed something even more was wrong and that’s when my mom had to fly home. We were on our own. She screamed and cried A LOT. She never slept more than 15-30 minutes at a time and those times were rare. We weren’t sleeping. We were confused. This is how babies are! I started to reach out to people I thought would have the answers. Nursing friends, lactation consultants, parent friends, Internet groups. Is this normal?! What do we do? People told me to keep track with apps. Track her feedings, track her sleep, track her poop. They told me to make sure I got a shower, make sure I ate my meals, make my bed in the morning, it’ll make me feel better. I couldn’t put my baby down though. If I did, she screamed. She screamed in sheer pain. I knew deep down this wasn’t right. We took her to the doctor. She must have colic. Let’s put her on Zantac for reflux. She vomited a lot from this. So, let’s up the dosage. She vomited more. Some babies just scream a lot. His grandson did that for 15 months. 15 months?! I’ll have killed myself by then! I was serious. I thought I had post-partum depression. I thought I had it bad. Everyone I talked to made me feel like babies are hard and I just wasn’t able to handle it. My friends had all but abandoned me at this point. My husband’s paternity leave was over. I was on my own and I felt like I was going to walk into oncoming traffic. I had to get help and I had to get it right now.
I made an appointment with my midwife. I explained what was going on. She told me I was sleep deprived. She looked me straight in the face and said “I think your baby is sick”. Hallelujah! She listened to me. She heard every word. She referred me to a therapist and gave me a number to a new pediatrician. We made the appointments right away. The new pediatrician was a godsend. Your old Doctor didn’t test for blood in her stool?! He tested for blood. It was very positive. We worked on a plan. I had to eliminate dairy, soy, wheat. I did it. I went on a total elimination diet. We were going to find out what the cause was. Why not formula?! Formula costs a lot of money. Money we didn’t have. The doctor was suggesting she had severe food allergies and if we did formula it would be even more expensive formula. We are talking a BMW car payment. Maybe even a mortgage. It wasn’t an option.
Eliminate the foods. There was no question. I eliminated the foods. It took 4 weeks. After 4 weeks I knew what people meant when they said you should put your baby down and eat something, take a shower. I was finally able to. She wasn’t screaming 24/7 in pain anymore. There was still an underlying something going on and we worked with our pediatrician and pediatric allergist to find out that not only was she allergic to dairy and soy, but she was also allergic to eggs. After that we found out she was also allergic to chicken. It took another year for the allergist to call it FPIES (Food protein induced entercolitis syndrome), with an IgE allergy to eggs. I haven’t consumed meat, dairy, soy, or eggs since she was 5 months old. People tell me they couldn’t do it. I assure you, if it was your child, you could and you would. I have nursed far beyond what I ever imagined because her doctors think it was the best thing for her. She is healthy. She is happy. She is smart. She is beautiful. She is thriving. She is mine. I could not be more proud of her.
And with that, I would like to say hello, I am back. Back to the land of the living. Back to being someone outside of taking care of a sick child. I may have lost a lot of people along the way and that’s ok. I have gained many more and they are wonderful people. I am so grateful to the people who stuck by me. Mainly, my mom, my husband, my sister. It has been a really really hard road. I am just now coming up for a breath of fresh air. I am learning the joys of having a “normal” child, even though normal for us probably looks a lot different than normal for most. I am back with a new sense of self, a new perspective, a new love. I am still learning. I still need patience and grace, but I feel as though I can feel safe in the world again. And if anyone wants to come see my amazing daughter, even meet her for the first time since she has been somewhat shielded, please let me know. She is sure to make you laugh.