Team Nani's Adventure

So from the beginning: I was told it was nearly impossible for me to get pregnant, let alone keep the pregnancy to full term as I basically have "bad plumbing" from endometriosis and PCOS (polycystic ovarian syndrome). While my husband and I were looking into other options for starting a family, we also kept trying to naturally, because well, it's fun.

This past year, while looking into surrogacy,and at the same time signing away our lives for our first home, we found out that we were pregnant!! I remember I kept coming into work fine but by midshift, I would just get so sick. My partner finally said I bet you're pregnant and I just blew it off because of my history. Finally on the third day, as we returned from a call, we stopped at the drug store and I purchased four pregnancy tests. They were all positive!! From that point on, it felt like it was going to be so exciting, it was a whirlwind of wonderful. And then it happened.

A few shifts later, while lifting a patient I felt the sharp pain of sabotage in my uterus. After finishing up with that patient and call, I discovered I was bleeding and became a reluctant patient in the ER myself. After, tests, tears, and waiting we were so relieved to discover that she was fine. Such scary words for an expectant mother to hear: "threatened abortion". However that marked the beginning of a long journey through pregnancy.

For the safety of the baby and myself, I was placed on a leave of absence. I was able to collect a long term disability (LTD) through my employer, however due to policy, I now had to go without insurance, or go onto COBRA. My LTD became my COBRA payments. Being a high-risk pregnancy, we could not go without insurance. This meant my little family lost half of it's income. We discussed all sorts of options. My chiefs tried their best to find a position in which I could work without the stress of being in the field. They called to check on me. Honestly it really made me feel good about my job.

Unfortunately, my body is just not built for pregnancy. The further into my pregnancy, the worse it became. My blood pressure would drop if I stood too long. I had to wear compression socks 24/7 to keep blood pumping back up to my brain. Some days I couldn't even get out of bed. For someone that is generally active and constantly in motion this was pure torture. And then I woke up on the floor.

My husband was standing over me shouting. I still don't know what happened. One minute I was getting out of bed to shout out the window for the dogs to be quiet, and the next, Sim was yelling at me and shaking me. And then it hit me. OH MY GOD, WHAT ABOUT THE BABY?!?

We were admitted to L & D that night. They ran countless tests and procedures. The baby, thank God, was fine. The best they could tell me is that my blood pressure had dropped so low that it couldn't perfuse my vital organs and I passed out. That and I should refrain from yelling at the dogs. :)

Finally toward the end of October I was so worn out, and was having problems with my blood pressure and blood sugar, that they decided if I didn't deliver soon, they would induce. We set a date. When we called the hospital they were full. We were told to call back the next morning. When I woke up the next morning, I was soaked. There was brownish-red fluid on my bed. Immediately we went to L & D. We were admitted and it was explained that they would let me try to get through labor without induction as much as I could. 12 hours later, I was given a little boost of pitocin.

And then there she was! This beautiful, baby girl with this full head of hair and this gorgeous crying sound. The incredible journey of pregnancy, with all of it's up and downs, was finally over. All of the medical bills, lost income, hospital visits, were like a faint memory compared to the excitement of meeting face to face our little Nanikai Celeste Wilkes. Nanikai meaning "beautiful ocean" could not have been a better name for her with her deep blue eyes and breathtaking face. And then the nurse said "oh no."

There are very few things in my life that have been scary. Hearing a an L&D nurse say "Oh no" when inspecting and assessing our daughter take one of the top spots. Our little girl was born with a cleft palate. Not the lip, just the palate. This made feeding her a challenge. We were quickly introduced to the Haberman bottle.At first, we thought this is ok, different but ok. There was a learning curve, but we totally had this. Excitedly we left the hospital. And then a new adventure ensued.

Our Nani, started to lose weight. She would gain a little, plateau, lose a little, gain a little, plateau. It was an unending, maddening, roller coaster. We tried changing formulas several times but they always caused her to spit-up/ vomit, and cry. She was taking medicines to help her with any reflux she might have. We even tried adding rice cereal to the formula. The rice was rejected instantly. Still we rode the roller coaster. I felt as though the doctors thought we weren't feeding her. Even on the formula she spit up the least, it still felt as though she wasn't comfortable. My husband and I were becoming zombies. We thought this is just what it must feel like to be first time parents. My husband went back to work, and then I did too.
One weekend when my husband and I were both home, we just sat in our living room passing her back and forth trying to get her to eat. We spent Friday, Saturday, Sunday, & Monday morning 24/7 in two chairs just passing her between us. By the following Monday she had gained 6 ounces! By Tuesday she had lost 2 ounces. Her doctors finally had a "Come to Jesus" meeting with us during which they explained that we could not maintain this lifestyle. We were both exhausted. Nani was exhausted from having to work so hard to feed. We couldn't go to work for 12 & 24 hours come home feed her for 24 straight hours and go without sleeping or taking care of ourselves. And worst of all, it hurt and was depressing to know that we were working so hard without any progress and that Nani was uncomfortable and unhappy.

That's when we agreed to be admitted to the hospital to have the feeding tube placed, to again change her formula, and do a GI study. That was one of the best decisions we had made. The GI study confirmed the reflux was without relief. Her medicine was changed. The new formula, Elecare, in combination with the feeding tube have been the instrumental in Nani's improvement. She is slowly but surely gaining weight. No more plateaus and roller coasters. She isn't spitting up with every bottle (we still give her a bottle during a four hour break from the continuous feed). She isn't crying all the time from her stomach hurting because she couldn't tolerate the formula. We can actually touch her tummy without her making this awful, painful face. Of course, the best part is that aside from the weird feeling of the NG tube, she is happier.

We are asking for help because now that we have a plan that works for Nani, we cannot afford it. Walgreens is able to give us a reduced price on the Elecare for $33.62 a canister. Nani needs around 1 canister every 2 days. Our insurance company claims that "It isn't medically necessary for Nani to be on the Elecare." They refuse to help us. We make too much because we both work to qualify for assistance. However, the assistance programs don't factor in that we have a mortgage, medical bills, student loans, car payments, etc. We know that between the doctor's office visits (co-pays), specialists' visits (higher co-pays), future hospital stays (the surgery to mend the cleft palate) and just trying to feed and provide childcare when we work, we are tapped out.

My husband and I are paramedics and we both work full time. I work a rotation of 12 hour shifts, 7 shifts in two weeks. He works 24 hour shifts, 24 on/24 off for a rotation of 6 shifts with a 72 hour break. We are trying to pick up overtime, but then we have to adjust for childcare. We have cut our monthly bills down. We are re-financing our home (thank you Chris Nagle with Alpha Mortgage). We have asked for deferments, and extensions. And still it is not enough. We spent all of our savings from when I was on the leave of absence. In short, we could really use your help if you don't mind.


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Emily DH Wilkes 
Wilmington, NC
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