Life after the NICU

The outpouring of encouragement given after publishing my first attempt at writing was incredibly humbling.  Thank you all.  I was then given the great honor of hearing your stories. Oh, how I love your stories. Many of you, dear friends and even strangers, encouraged me to keep writing. Willow has captured your hearts with words and pictures as she has captured mine. Like the birth story that was written a year and a half after the actual birth, I have procrastinated this part too. As every mom knows, there's always something else to be doing. If I'm not working, I'm reading Dr. Seuss, doing laundry, going to doctor's appointments, or, let's be honest, catching up on the Bachelor. Also the second part of Willow's story is a bit less cohesive. You see, when your first year of life includes twelve hospitalizations, two surgeries, and two heart catheterizations, it is hard for the story to not sound like and then we were admitted to the hospital again and then we had another surgery and then we were admitted to the hospital again. But that's pretty much how it went.

When Josh and I brought Willow home at one month old, we were equal parts terrified and joyful.  We could sleep in our own bed and be in our own space, and for two introverts like us, it does not get much better than that. We were busy arranging home health, therapies, and insurance. Our daily routine included six medicines, six hour-long tube feeds per day, and rectal irrigations three times a day. Rectal irrigations are like enemas that were used to relieve the stool that was she unable to pass because of her Hirschsprung’s Disease. HD is a bowel problem where a baby is born without the nerves at the end of their colon that allows it to contract and pass stool. Rectal irrigations are performed several times a day in hopes of putting off inevitable colectomy until babies are bigger.

If you are exhausted reading this, you can imagine that we were exhausted living it.  And this is from someone who understands exhaustion. I survived medical school and was a third year resident physician when I delivered.  I worked eighty hour work weeks as a resident and survived.  This was worse.  I worked thirty hour shifts every fourth night for my entire intern year.  This was worse. I was used to pushing through to your thirtieth hour by promising yourself a nice long nap at the end of it.  This was the kind of exhaustion where no matter how tired I was, I still got up and did it again the next day.  But I am nothing if not determined so Josh and I made a schedule that seemed fair enough, and we stuck to it.  I also had the best partner who shared equally in everything. If you know him, I am sure you will agree. He is the absolute best.

We had only been home one week when Willow started throwing up after every tube feed.  She had done this some in the nursery so we did not think too much of it at first. Initially it happened every now and then but then it started happening every time we fed her.  We slowed the tube feeds down, elevated her head, but nothing worked.  One morning at around 3am, I got up to do a tube feed, and Willow could not keep any of it down.  I did not want to wake Josh so I tried to do a rectal irrigation by myself.  Instead of stool, I got blood. It was only a small amount but enough to be concerning.

I called the resident on call for our pediatric surgeon. It was the intern, bless her. I remember being the intern.  She said to wait until the next irrigation and see what happens. Classic intern move. I remember using that one myself. You do not know the answer so you buy some time to think, read, and ask somebody. We did this and the next one showed much more blood. When we could not get ahold of the surgery resident again, I called our pediatrician.  He agreed to meet us in the local ER, at the hospital where I work. Our pediatrician was in the middle of seeing Willow when our surgeon called us back personally. He told us in no uncertain terms to come to Charleston. So this is what we did.

When we arrived in the pediatric ER, she was immediately evaluated.  Everyone agreed that this was Hirschsprung’s-associated enterocolitis, an overgrowth of bacteria that occurs commonly in children with HD.  Good. We’ll be up to a room soon to begin treatment. We should have known better. Willow was an impossible IV stick because of her time in the NICU, and fourteen hours later, after ER nurses, NICU nurses, and anesthesiologists had all attempted unsuccessfully, the PICU attending was called in from home to do a central line.  By this time, her blood pressure was low, and her blood work showed that she would need a blood transfusion. Finally, we were admitted to the pediatric ICU, and Josh and I started what would become a routine for us. I passed out on the couch at the hospital, and Josh went to my parents. We would then trade off nights at the hospital and nights at my parents' until Willow was discharged so that at least one of us got a real night's sleep.

Willow was started on IV antibiotics, her tube feeds were stopped, and we continued doing rectal irrigations.  It was serious.  If this did not get under control, she could lose her whole colon.  Cardiology got involved. Because of her severe pulmonary hypertension, Willow was at high risk for any and all complications.  The cardiologist said Willow would need a heart catheterization in two weeks. We were in the hospital for a week and discharged home with the addition of oxygen for her pulmonary hypertension (which, by the way, is like living your life on a leash) and preventative antibiotic.

After we were discharged, I returned to work. I was just working clinic for my first couple of weeks back.  Coming back to work was a mixed bag.  I enjoy working and returning to work in some ways made me feel normal again. However, I was coming back to a hospital in a small town where everyone seemed to know my business. This was business that we had not yet made public and should have been protected.  I suspect this information was disseminated through the gossip chain known in the south as prayer requests. My friends would hide me in the physicians lounge and bring me food so I wouldn't have to brave the cafeteria and all of the well-meaning questions. Everybody had a story about somebody they knew with Down Syndrome: friend, neighbor, uncle's friend's cousin, you get the point. I tried to be polite, and occasionally I succeeded.

Two weeks later, we went back to the hospital for Willow's heart catheterization.  We consented for the procedure, and the fellow took her back. The procedure took a couple of hours, and afterwards, we met with the attending cardiologist. She said that Willow had severe pulmonary hypertension. She had the primary type which is much more ominous than the kind caused by a heart defect. In fact, her heart defects were probably keeping her alive, acting as a pop-off valve for the high pressures. The plan was to start another medication called Bosentan that required a two week prior authorization process because a month’s supply is worth more than my car.  We would then get another heart catheterization after that medication to reevaluate. She said sometimes within a child's first six month of life, something in her lungs remodel, and the pulmonary hypertension gets better. And if it doesn't? I asked. Then we are in trouble.

We were sent home after being observed in the PICU for several hours but decided to stay in Charleston overnight. Willow was uncharacteristically fussy when we got to my parents' house. Then during a tube feed, she started vomiting and turned white as a sheet. We knew at that moment we were going back to the hospital. Josh sped down the highway and made a typically fifteen minute drive in about five. We arrived at the ER and were immediately taken back. Her blood pressure was low, and everyone sprang into action. They gave fluids and drew blood. Her hemoglobin had dropped two points since that morning indicating that she was losing blood from somewhere. They called in the pediatric cardiology fellow who looked at the site of access for the catheterization. She said it looked okay, but she would order an ultrasound to look for a retroperitoneal bleed (bleeding into a space in her back). She assured us that this was rare.

Her blood pressure improved quickly, and she was admitted to the cardiology unit. Her ultrasound did come back showing a retroperitoneal bleed. That is why she was so pale and why she was vomiting. You see, the area of bleeding was large enough to push against her bowels, causing her to vomit. Over the next two days, the bleed stabilized and she was discharged.

We got home with new information that weighed heavily. Everyone seemed to know this was bad, but no one wanted to really talk about it.  Josh went to Charleston for a cardiology visit without me.  He tried asking these questions.  He said, If it does not resolve, how long does she have. Her whole life, he said. How long is that? Josh then asked. Forever, he answered. How long is that?! Oh, maybe 3-4 years, the doctor finally answered. Finally Josh and I called one of my best friends from medical school who is a pediatric cardiology fellow. He is a straight shooter, and we knew he would speak to us plainly.  He confirmed our suspicions. People cannot live more than a couple of years with severe pulmonary hypertension.  If it did not resolve by the time she was six months old, it probably never would. There were medications that could prolong her life by a year or two, but they were not a cure, and we were all of the medications already anyways. Some people get lung transplants but transplants generally only lasted five years, and you were back where you started.

I told God that he was cruel. If he was going to take her from us, he should have done it earlier. Now it would be too painful. I would be up at 3 am and look at her sweet face and just cry. They were sad tears for all of the suffering she had to endure. They were angry tears, because I felt it was not fair. She was the perfect baby. I mean, for every physical difficulty, her sweetness was multiplied. She was pure joy. When I finally ran out of tears, we decided that if we only had her for a limited time, we would enjoy the time we had. We kissed her a hundred times a day and told her we loved her. My grandparents sold some stocks and split the money between the grandchildren. We spent every cent on an absurdly expensive camera to capture all of the memories. But God and I were not okay.

We had two more hospitalizations for enterocolitis prior to her Hirschpsprung’s at 6 months old.  Each of these were less severe than her first episode, because now we knew the signs. By the time of her surgery, we were ready to be done with the rectal washouts that probably took two hours of our life every day. The plans were to remove the part of her affected colon, place a permanent feeding tube (so we could stop placing NG tubes), do a sedated hearing test, and place ear tubes.

Thankfully, I was able to take some time off to go to Charleston for Willow’s surgery.  We were nervous underneath our composure, but I think we were pretty used to this all by now.  The nurses and doctors kept waiting for the emotions I am sure they are used to from parents.  We had been through so much at this point, we handed her stoically to the surgery team. I even had the thought that if she was going to die from the pulmonary hypertension, please God, just let her die during surgery.  I was so afraid of loving her even more than I did right now and having her ripped from me two years from now after suffering what I knew end-stage pulmonary hypertension looked like.

She did well with her surgery.  They removed 30 centimeters of her colon which sounded like a lot to me, but I was assured it left plenty for normal bowel function. She had a PEG tube (a permanent feeding tube) so we would no longer have to place NG tubes. Her hearing test showed that she had normal hearing in her right ear and mild-moderate hearing deficit in her left, which we were told was unlikely to significantly affect her speech development. Overall, this was good news. They slowly re-introduced feeds, and several days later, she had her first bowel movement. Then several days after that we were discharged home. I naively thought we were done with bowel issues and could move on to focusing on her heart and her development.

She did well after her surgery for several weeks having normal bowel movements. We did have to do dilations which is as terrible as it sounds. It's pretty much sticking a dilator into her rectum several times per day to prevent scarring of the surgery site. She started vomiting several weeks after her surgery. This seemed the same as the enterocolitis she had so many times before, but we were confused. We thought that the surgery would stop this. Apparently it's not uncommon for the bowels to not work, at first, and she had another episode of enterocolitis.  Another drive to Charleston, and another admission to the hospital. She began having the same symptoms late one Friday night. We knew by the next morning that this was enterocolitis and that we needed to drive back to Charleston.

Unfortunately this occurred on a dreaded day for every third year resident at my program. It was the Saturday that I was on my hospital medicine rotation.  There are only three of them the whole year, but this Saturday was mine.  You are in charge of your whole medicine team. You get up to the hospital early, usually around 5:30, and round on all of your patients. Then, because of work hours, the intern goes home, and you are left on call all day and all night for all of the medicine patients and admissions. Then you wake up the next morning, round again, and finally leave after rounds the next day to collapse with exhaustion. My co-workers had covered for me so much in all of this, but I was pretty sure that there was not anybody who could help with this. Besides I had to be in the hospital in two hours and didn’t have time to find anybody.  So we packed the car and Josh and Willow left for Charleston without me. Two of Josh's friends met at our house and drove our car to Charleston while the other followed. Worst. Day. Ever. I can say my empathy level for my patients was not at its highest.  Your back hurts? Oh, I’m so sorry. I am here rounding on you while my kid is in the hospital three hours away, I would think.

She was admitted quickly and then discharged 3 days later after IV fluids and antibiotics. This was the Same old hat to everybody else but was getting very old for us. I started wondering if this is what our lives would look like forever, living from hospitalization to hospitalization. There were two other episodes before the summer of this same thing. We were back to doing rectal irrigations but only daily now, and we were realizing that Hirschsprung's was not necessarily 100% cured after surgery.

We had a second heart catheterization scheduled and, though I was still on a busy hospital rotation, I was able to arrange for coverage so I could go down to Charleston for the day. I knew this day would be important. There were three possibilities: a.) no change in lung pressures which would mean poor prognosis and very short life expectancy b.) some improvement which would mean she had responded to the medication and would perhaps have a slightly longer lifespan but still overall poor prognosis, or c.) total resolution of her pulmonary hypertension which means we could anticipate a normal lifespan. The procedure was uneventful, but the news was life-changing. Her lung pressures were almost normal and, they anticipated total resolution after repair of her cardiac defects. For the first time since Willow was born, I cried tears of joy. For the first time since she was born, I began to picture a future. Josh and I agreed that we would throw her the best first birthday party ever!  And we did. Many of you were there.

By that summer, we were planning her open heart surgery. She had three cardiac defects (an ASD, a PDA, and aortic arch hypoplasia). A week after I graduated from residency, we went to Charleston for open heart surgery. The surgery was uneventful, if you can even say that about cracking a baby's chest open, fixing her heart, and wiring it back together. We were out of the hospital in a week with a prescription for Lasix and instruction to not pick her up under her arms for six weeks or else we could separate her ribs from her sternum. This forced us to pick her up in slightly less orthodox ways which eventually led to Josh having some pretty significant back pain. We almost immediately began seeing a difference in her energy level. She was more interactive and fatigued less quickly with activity. She started rolling, laughing, and even sitting unsupported.

In September, we celebrated her one year old birthday. I am not a party planner, and I honestly used to think that birthday parties for one year olds were ridiculous. Well, we not only had a party but it was ridiculous and over-the-top with a jump castle, our very own brew for the adults, a DJ, a piñata, and tons of food. We celebrated the life we felt beat all of the odds and the family and friends who have helped us through it.  Willow was tired before it all started, but Josh and I partied late into the evening with friends and neighbors. I am sad to say that I did not take a single picture of that day, but trust me when I say it was awesome.

Throughout the whirlwind of the last year and a half, I have read books, blogs, and articles about suffering, searching for that one bible verse, theology, or neat answer that would explain it all. I wanted something that would wrap it up in a neat package to help it all make sense. I do not have that for you, because I did not find it. Life is not easy or neat. It's messy. I do know that suffering is universal but not equal. Some suffer much and some suffer little, but everyone suffers. Some live, and some die. Some get better, and some do not. I have read a couple of good things on the subject including Tim Keller’s book Walking with God through Pain and Suffering and Jen Hatmaker’s blog.(http://jenhatmaker.com/blog/2013/09/17/why-does-god-allow-pain-and-suffering). They are both smarter and much more eloquent than I am.

I do know that I will never again respond to someone’s grief with theology or quick, easy cliches.  Trust God. He has a plan. It is cruel.  One of my new favorite passages is found in John 11. (Stick with me. I will keep the bible study to a minimum.) Lazarus, Jesus' friend, had just died, and Jesus was coming to his funeral. His sister came out to meet Jesus and said If you had been here my brother would not have died. Jesus could have said many things, and He did. But Scripture also says that He wept. Let's not miss this. I find it to be a profound example of how we are to respond to one another in suffering. I hope that we can care for one another and allow each other to express honesty without fear of judgment or improper theology. I hope we can weep with one another, bring each other food, and clean each other's houses.

I remember speaking with a Haitian missionary who lived through the earthquake and watched children die in the wreckage with no resources to help them. She struggled with wondering why these things happen and how God could allow it. She told me that she finally decided that she could either choose to walk with God through painful things or turn her back on Him. She chose to walk with Him. If you are someone who has chosen to walk away from God or maybe even to cease believing altogether, I do not blame you. I actually think I understand you. I, however, have chosen a different path, and I have not regretted it. He has shared my burdens, and I believe, He can relate to us in our suffering.

Though I would trade a healthy body for Willow for all of the lessons in the world, I might as well take my experiences and learn from them. Many have told me what a good doctor I would be after all of this, able to empathize with my patients. True. But so not worth it. Besides, surely I wasn't that bad before this. I have learned surrender in a way that I never have before. There's nothing like having to hand your child over and over again to the hands of doctors to realize that you are not in control. She has been entrusted to me even if it's only for a time. As many of you know probably better than I do, this is not easy. And sometimes it makes you angry.

I have learned to find joy in unexpected places. When you have a child who is tube-fed, each sip and bite brings happiness to your heart. When you have a child who has developmental delay, you learn to celebrate each milestone as it comes, even if it comes late. When you are in the hospital all of the time, you appreciate quiet nights at home with Netflix and Thai food takeout. When you have to be in the hospital, you learn to appreciate that at least you are in a city with good Indian food.

I promise you that the next thing I write will not be this heavy, maybe a recipe or some cute pictures. I don't want y'all thinking my life is all hard. It is not. Since Willow's first birthday, she has had one hospitalization for enterocolitis and an overnight hospital stay for croup. We are doing washouts still but only every four days. We are down to one medication daily, and we use her feeding tube only for medicines and hydration when she is sick. We have moved her specialty care to a pediatric hospital one hour away. She is learning to crawl, feed herself, and say a few words. She loves dancing to Katy Perry's Roar, Chick-fil-A, her daddy, and all of her crazy, Ukrainian cousins. She is adorable and charming, but most of you know that. I have a job that I love most of the time that allows me to spend full weeks with Josh and Willow. Her birthday bash will be happening this year again. We are calling it Willow-palooza, and I hope you can make it.