By Sally
JulianHave you ever met someone and within the first 20 minutes of knowing them, you know you'll be friends for life? This is how I felt about Joy Drake Silver, whom I met when we were working for an internet start-up in San Francisco back in 1998. She was my best friend at work and I learned (and continue to learn) so much from her. Joy married her soul mate, Scott, and a few years later they welcomed their first child, adorable Gigi. In October of last year, via emergency C-section, Joy delivered their second child, son Julian, almost 3 months premature. They have spent over 130 days in the hospital with Julian and still have many challenges ahead of them. Joy is an amazing woman and I know if anyone can come out of this trial stronger, she will.
Please briefly describe the events at the end of your pregnancy and these past months since the birth of Julian. What is his current status and what are the best/worst case scenarios for the future?
My pregnancy had many warning signs, blood clots in my legs in the first trimester, flunking the Nuchal screen between weeks 11-18 and being flagged for downs syndrome (cleared all genetic issues with amnio), ultrasounds where the baby’s size didn’t match the dates and he just seemed too small, and then at 25 weeks spiking high blood pressure out of the blue. My OB/GYN dismissed every warning sign along the way.
My intuition, and my friend Bonnie who had experienced Preeclampsia herself, screamed at me to get help. With the help of my internist who was alarmed as well, I went to see a high-risk specialist who told me at week 26 that I was in danger and my baby’s life was in danger. That it wasn’t safe to fly anywhere and to stay off my feet. I had Preeclampsia (also called Toxemia) and he was hoping he could get me to 32 weeks. I have been living in a crisis mode/ fear place ever since then, which was almost six months ago.
Eventually, it was essential to hospitalize me and watch the baby’s and my health. I made it to 29 weeks and 3 days. Jules, who was due on Christmas, was instead born 10/10/2008 weighing 1.5 pounds, the size of a 25-week-old baby, because my placenta could not get him the nutrition he needed to grow.
He has been in the hospital ever since. He now weighs 8.5 pounds, is about 130 days old or 8 weeks adjusted, has been diagnosed with severe lung disease (Also called chronic lung disease and Bronchopulmonary Dysplasia). Finally, after four months in the ICU unit, he has made it to the pediatrics floor at Children’s Hospital.
Julian on day 2The worst case scenario for his future would be having to intubate him and sedate him so that he wouldn’t have to struggle to breathe anymore and then give him a tracheostomy. This would mean some developmental setbacks and heartache/hardship for us.
The best case scenario would be if he could wean his dependence on diuretics to pull fluid from his lungs, switch his feeding tube to his tummy from his intestine, and convince his body to require less oxygen support, which in the best case would take seven weeks with the countdown beginning after he had been stable for a week or two, which hasn’t happened yet.
What is a typical day for you and Julian? How are you caring for Gigi and taking care of regular life (bills, appointments, laundry)?
A typical day for me is getting Gigi (age 4) off to pre-school at eight, and then going to the hospital all day, until it is time to pick Gigi up at three. We are taking care of Gigi by not altering her routine. I still take her to school and pick her up most days, we have family dinner every night, and she is over programmed on the weekend with swimming, music, and ski school with her dad so that she doesn’t notice I am at the hospital and not with her as much. After putting Gigi to bed, Scott goes to the hospital after dinner each night to give Jules his bath and put him to bed.
Gigi turned 4 while Julian was in the hospitalWe have hired a great nanny named Heidi to take care of all of us. She helps cook dinner a few days a week, fills in with hours at the hospital when I can’t be there, takes care of Gigi on no school days so I can be at the hospital, and helps with a million errands. We have also hired our housekeeper for twice a week help.
I have not figured out how to take care of appointments or stay on top of paperwork.
My day at the hospital includes some of the nice things about taking care of a new baby, changing diapers, playing with him, singing to him, and moving him from the swing, to the bouncy chair, to his bed, and rocking him to sleep. I just do all those things with a lot of cords/tubes/wires attached. The thing I miss the most when taking care of him is the bonding that occurs with nursing or bottle feeding. Not being able to feed him and look in his eyes while providing that has made me feel very empty.
Jules has had great Physical/occupational therapists. Jan at University of Washington helped make sure he didn’t develop an oral aversion by working with him and his pacifier to keep him inerested in it. When we moved to Children’s hospital he met Keren, who his is daily PT/OT. I call her the baby whisperer, which embarrasses her, but I really think it is true. She has taught me so much about how to connect with him and care for him despite the medical scenario.
binky training
Most of my days include time with Keren where she shows me how to keep Jules on developmental targets like enough tummy time and lifting his head time, time to bicycle his legs, helping reward him when he reaches for things, and most importantly binky training. Keren has a device that is roughly a pacifier with a tiny hole in the tip, which is threaded with a small tube connected to a syringe. Jules gets to suck on the pacifier as though it were a bottle, but I control how fast he is able to eat through the syringe, so that I can stop him if he tries to eat too quickly for his rate of breathing. I LOVE binky training and so does Jules. It is close as I can come to feeding him for real.
I discuss his care with the nurses, meet with respiratory folks, doctors, and specialists all throughout the day and then tuck him back in bed or trade-off with our nanny when it is time to leave.
I am very lonely a lot of my time at the hospital. Most of my friends work during the day or have small children, so they can’t visit me. My social isolation can be piercing. It is really nice when someone just stops by and drinks a cup of coffee, even for just twenty minutes. The worst part is that I am too exhausted mentally to even handle the time and effort it would take to arrange for someone to visit me.
Day 46, what a sweetie!
Who are you leaning on? Tell us about your circle of friends and family, what they have done for you and what you’ve most appreciated. What can people do to help, and what questions should people ask you?
I am leaning on anyone who will let me lean on them, including a trauma therapist and a regular therapist = ) Our family has been supportive and has flown in to help, especially to spoil Gigi and shower her with attention when we couldn’t send a lot of energy her way. Our community and friends have helped us connect with the right doctors (Dani and Rebecca), get us to the right hospital (Dani and Mark), and now when we really need it, helped make meals for us (lots of lovely people).
When we had the emergency C-section, my friend Irene picked Gigi up from school and Gigi had her first sleepover with her friend and Irene’s daughter, Hannah. Gigi had the time of her life and associates the night Julian was born with something very positive in her life. Irene and her husband have also stayed with Gigi at night while Scott and I pushed through tough times at night at the hospital.
sweet swaddled little guy
My next door neighbor Laura heard about what had happened and told me she wanted to help. She said she would rake my leaves all through the fall and would stay at our house any night with Gigi if Scott and I needed to be at the hospital. This really stands out for me because she told me exactly what she would do for us and did it.
A lot of people offer to help and say, “What can I do?” That is so hard for me to answer because I don’t want to ask someone to cook who doesn’t cook, or ask someone to help clean up my yard who hates that kind of thing. I don’t know what people can do and it is hard for my personality to ask for help.
I have replayed my conversation with Laura in my head and reminded myself a thousand times that if I ever have the opportunity to help someone through a prolonged medical crisis, I am just going to tell them what I can do and start doing it until they tell me to stop.
I don’t have the capacity in terms of time or emotional put-togetherness to even articulate what I need. Having people just drop off dinner or rake my leaves without asking has really touched me.
My friend Jeremiah wrote me an email telling me he would do anything to help, from cleaning my house to pruning my yard, to cooking, whatever I wanted. I cried when I read his email.
One of the nurses at the NICU told me that the best help for me would be if one of my friends would coordinate meals and another chores for me, like yard work, folding laundry, cleaning out the fridge, etc… and just let people sign up. I have just started with the meals, but I haven’t been organized enough to do the chores thing, but it sounds like a great idea.
Gigi’s babysitter named Randi, who she hasn’t seen since October, dropped off a surprise valentine’s day gift for Gigi. This made me cry too, because Gigi has endured a lot of time without her parents, a lot of time being foisted on other people, and a lot of attention focused on her sick brother, and it was so kind of someone to think of her and do something to brighten her day.
Scott, Jules and Gigi at the hospital
What has been the lowest point of the whole experience and how are you getting through it? Where do you turn for inspiration and motivation?
The roughest part of the whole experience is right now. Now that the fear for the pregnancy is over, the C-section is over and Jules came out of the NICU to the pediatrics floor, four months have gone by and we know there is likely another 3 more coming. We are exhausted emotionally and physically and depleted. The pace of life is demanding. We don’t see each other as a family except for dinners and it seems daunting to look ahead. Jules seems to teeter on the edge of being shipped back to the NICU and intubated all the time and it is hard to keep a clear head.
Julian a few hours after birth
And now that I think about it, the other low point was just after the C-section. I don’t know if all people who have C-sections feel like this or if it had to do with the emergency nature of the situation, the trauma of the pregnancy, and/or how early and tiny Jules was, but I felt blindsided by the delivery. I had no idea it was coming so fast. I figured I had at least 3 more weeks of bedrest before they would do the C-section. And when it was over, I lay there feeling like someone had stolen my baby. They took him away to the NICU on a wheeling thing about fifteen feet away, which was the closest I ever got to him, and I couldn’t even raise my arm to wave goodbye. I wasn’t allowed to see him for two more days and I was just so sad. I mourned the loss of the pregnancy, the dreams I had of bringing home a baby, and when I saw him with jaundice goggles and intubated, the only part of his face I could see was his chin. I had no idea what he looked like and I wasn’t allowed to hold him for a long time. That was definitely a low point.
Jules keeps me motivated and inspired. I just keep putting one foot in front of the other and thinking about how he fought to live inside me with no amniotic fluid and a dinky placenta, he fought to go from 1.5 pounds to 8.5 pounds, he fights to breathe every day, and he still has learned to smile and coo. He is truly an inspiration.
Jules getting some sun therapy
You converted to Judaism more than a decade ago. Does religious faith help you in this situation? In what way?
Yes, I think it has helped me stay grounded. I can’t get to services and was hospitalized for the most important religious holidays this year, but I say the same prayers over and over to Jules and myself for comfort. There is a Jewish prayer for healing that I know friends and families are mentioning Julian’s name for when it is said at their synagogues, and I believe in the power of prayer. At the worst turning points for Julian, when I have asked for prayers for him, I have felt like he was able to turn things around afterwards. I think Sally herself said at one point that we witnessed a miracle after one of those nights of praying.
Taking the time each week to observe Shabbat with Friday night dinner and have that dinner with Gigi and say the traditional blessings and stop working has been a nice connection with our former life and given me strength each week.
The pictures of baby Jules are adorable. Are you able to laugh and find joy during this time of stress and difficulty? Are there good things that have come from this experience?
Yes, I have been able to laugh and enjoy him and Gigi during this time. Scott and I have not been able to relax or go to a movie or anything like that though. We just can’t relax unless we are at the hospital. So we have some work to do on that front.
Maybe I will think differently about good things coming from this experience when I look back many years from now, but right now it feels too raw and painful to see much positive. I thought at first when I answered I would write about how it has brought me closer to certain friends who have really been there for me. And while this is true, I would rather have gotten closer to them through a positive experience instead.
What is your opinion of Julian’s medical care and how has your experience changed how you think about medicine?
I am pretty angry about medicine right now. I am furious over my experience with my original OB/GYN, who ignored even my internist’s concerns about my blood pressure. If I had let her be in charge, I am confidence that either Jules or myself or both wouldn’t be here right now.
The hospitals are so busy and the doctors so overworked. I have lost my faith that doctors will look out for Julian and do the right thing. They barely have time to read his chart and often have facts about him completely wrong. It is stressful to realize how critical Scott’s and my one hundred percent intellectual dedication to his medical case has been.
We have had twenty five attending doctors in the past five months. Four of them I would trust if I had to go out of town to keep Jules stable. Eight of them did not make much of an impression. The rest scared me, not because they were bad doctors, but because they were too busy to give Julian’s case the thought it deserved.
The most ridiculous anecdote I can share about medicine is that when Jules was diagnosed with severe lung disease, he was at a Level 3 NICU, which is the most serious type. We were at University of Washington where all the babies from Idaho, Washington, Oregon, Alaska, and Montana are flown who are the most sick. Over time, Jules turned into one of the sickest kids on “the unit,” as they called it. But, they had no pediatric lung specialists there and could not convince one from Children’s hospital to come see Jules. It took Scott’s and my complete dedication, help from friends, community, and constant hyper-vigilance to get Jules out of that hospital and over to Children’s hospital where they actually have doctors who can treat him!
How do you advocate for Jules? Have you ever had to stand up to a doctor or nurse? Also, on your blog, I’ve read the phrase “going on rounds”—what does that mean?
Rounds occur in the morning when the entire medical team responsible for caring for the baby meets in a conference room or at bedside to discuss his care and plans for the day. This means the attending doctor (the one in charge), the residents/interns, fellows, nurses, respiratory therapists, nutritionists, coordinators, physical therapists, etc… I cried the first time I went to rounds and realized it took fifteen people to keep my baby alive.
Scott and I have to advocate for Jules every day. We have had to stand up to many doctors and very rarely, a nurse. The nurses have also been good advocates for Julian.
Do you ever have 'why me, why my baby?' days? How do you get over those feelings and move on?
No, I don’t. Scott has had a lot of this. I think it will hit me after it is all over. Sometimes, I remember when Gigi was four months old and nearly died when a urinary tract infection spread to a kidney infection and then she went septic, all within twelve hours. And I feel a little sorry for myself that I have not been able to enjoy the infancy state with my children without such fear. Holding your really sick baby and willing him/her to live is not something I would wish for anyone. But in the end, I have to be there for Gigi and for Jules and a pity party isn’t going to help any of us. I try to focus on rewards in the future, like when Jules is off oxygen, going on a trip to San Diego with Scott’s parents like we did when Gigi was first born. Or imagining and visualizing Jules being home with us.
What advice do you have for families with preemies or new babies with compromised health?
Get involved with your child’s medical care right away. Learn everything you can and advocate. Your child needs you and you CANNOT rely on the medical team to take care of him/her alone. When people tell you having a preemie will put you on a rollercoaster, they don’t really say what that means. It means that you will never feel safe. You will always be worried a new shoe will drop. You will pray, worry, fret, and agonize. Get help as soon as you can because it snowballs really quickly. You can’t do it alone and as humbling as it is to ask people to help you, you need to do it and will feel better for it.
Also if you can’t take care of yourself, you won’t be able to take care of your baby. So get the sleep you need so you don’t get sick. They will not let you in to see or take care of your baby if you even look like you might sneeze. So, take care of yourself. You have to sleep, eat, and even get your hair cut. Even if you don’t want to do so.
Gigi and Julian
Finally, what impact has this had on your marriage and your relationship with Gigi? How has this changed your life and your perspective on being a parent?
One of the NICU nurses told me my first week that seventy or so percent of marriages in the NICU fail over the course of the experience. I hired a trauma therapist to help Scott and me right away and I think getting the help of a specialist who knew the NICU team and experience we had in front of us made a huge difference for us and our marriage. She convinced us to hire a twice-a-week housekeeper, to use rainy day savings for extra help (because it is raining right now,) and helped each of us figure out what we needed to get by. I think our marriage has been strengthened by this experience. We have watched each other shoulder amazing burdens and overcome obstacles for each of us that amazed us.
Joy, Scott and Julian
I feel like I don’t get to see as much of Gigi and don’t know her as well as I did before this happened. I don’t know how much of that would be the same if I brought home a newborn though. I have been impressed with Gigi’s ability to adapt and cope and how sweet she is with Julian. She longs for him to be home too.
Thanks, Joy, for sharing Julian's story with us. We hope that he will continue to gain weight, start breathing like a champ, and come home soon. You can read more about sweet baby Julian's progress at the Silver's blog about him.
