The Importance of Hand Washing and Sibling Touch

I saw the excitement in my daughters’ eyes as we entered the NICU for them to meet their sister, Lydia, for the first time. We filled out the sibling visitation form and proceeded to the hand washing station and meticulously scrubbed their 7 and 5 year old hands and fingers.

Our newest daughter, born at 27 weeks weighing 2 lbs 7 oz, was enclosed in her isolette, which served as both a painful barrier to us being together and a protective cocoon, encapsulating her from what now seemed like a world full of germs, any of which could threaten her very survival.

I will admit that with my first two children, I was not the mom who was forever fretting about germs and getting sick. Quite the opposite. Never having owned even a shopping cart cover, you might have seen my older girls licking the cart handles. Well, maybe not. But you get the point. Then I had a preemie.

In the dim light of my daughter’s hospital room, her big sisters peered into the isolette, eyes full of wonder and amazement, far from the fear I had anticipated. Then they asked the question I had been dreading, “Can we touch her?” I knew it was coming. My mind had to balance the desire for them to begin to love and care for their little sister with the knowledge of just where those little hands had been! Preschool and 1^st grade, the playground, the restroom, the cafeteria, the library, dance class…and my head began to spin.

Then I remembered that we had thoroughly washed and scrubbed the girls down just minutes before. We were also fastidious about using the hand sanitizer attached to the hospital wall at the entrance of the room. I opened the isolette door, and I watched a relationship of love and acceptance blossom that many people never get to witness. It was fascinating how my older daughters didn’t seem to notice the ventilator, feeding tube, PICC line, monitor, or anything else for that matter. They only saw their sister, whom they loved and adored just the way she was from that moment until this very day. It was unconditional and forever. I’m glad my fear of germs did not stop me from opening the holes of the isolette and letting sisters create a tangible bond through touch.

 

 My girls soon became pros at handwashing over the course of our 79 day NICU stay and especially after discharge. We came home in October, the beginning of RSV season here, and one of the biggest dangers to my preemie was her school age siblings. We followed a strict quarantine for six months, but the germs my older girls encountered during the day at school came straight to our front door in the afternoons. We soon developed a routine. Hand sanitizer upon entering the car and no touching the baby until we got home. They loved to sing to her during this time! Once home, upon entering the laundry room, all clothing and shoes for the day came off, and both girls went straight to the bathroom to wash hands and apply hand sanitizer. Singing a favorite song is a great way for kids to wash hands long enough! Finally, fresh clothing went on and sibling playtime could begin!

I am proud to say that my girls continued this daily hand washing routine from October until the end of the school year. They took it very seriously and were on a mission to protect their sister, even requesting mini hand sanitizers to keep in their backpacks. I credit excellent hand washing (and quarantine, of course) for us having a healthy RSV season, only visiting the pediatrician for a sick visit once for an ear infection. According to the CDC, good hand washing can reduce respiratory illnesses by 21%! That’s music to a preemie mom’s ears!

We just learned that our daughter does not qualify for Synagis this RSV season. Combine that with the enterovirus scare, and I enter this cold and flu season with trepidation. The good news is that hand washing, along with avoiding those who may be sick, can help stop the spread of these viruses that can be so harmful to already fragile babies and children.

 

Do not underestimate the value of hand washing in protecting your preemie. Do not let people tell you that your baby needs to be exposed to germs. Do not be afraid to ask people to wash hands before holding your child. You must be your child’s first line of defense, and one of the best weapons against illness is good hand washing. It’s easy, cheap, and everyone can do it!

For more information and a how to on proper hand washing: http://www.cdc.gov/HandWashing/pdf/wash-your-hands-poster.pdf

5 Rules to Help Your Marriage Survive Medical Training

Ten years ago my husband and I embarked on a journey. We had just graduated college. After saying, "I do," we moved to a new town to begin his quest through medical school, ortho residency, and now ortho trauma fellowship. Through two moves, three kids, and now living apart for a year during fellowship, I have learned a thing or two about making a marriage work during medical training.

1. Stop waiting for the day your doctor in training will have more time.

I hate to burst your bubble, but this day never comes, especially for surgeons. At first, I would think that if we could just make it to (fill in the blank with the next step), that my husband would be home for dinner, after school activities, heck, even bedtime for the kids. It's been 10 years, and it hasn't happened yet. This is one of those things that when I realized that it wouldn't change and accepted it, I became a happier person. During residency, our kids sometimes saw him two weeknights at the most, seeing as how they were long in bed by the time he got home. We have used Facetime for bedtime and even birthday parties. You have to adapt to the hours. They will not change.

2. Learn to manage the household alone.

Okay, that may sound harsh, but you want the truth, right? My husband goes to work, and that's mostly it. However, when work means 80+ hours per week, that's all there is time for. When he is home, spending time with the kids is top priority. That means any and everything that needs to be done around the house falls to me. Pay the bills, check. Do all household chores, check. Take the kids to all practices and appointments, check. There is no point in nagging your spouse to do things that realistically, there is no time for. Find a system that works for you and buckle down and get it done. I no longer find this area of our lives overwhelming.

3. Use the small bits of time to connect.

If you are married to a surgeon, you probably get the same kind of phone calls that I do. My husband usually calls in the few minutes that he has between cases. The calls are usually brief, as he is getting ready to scrub in yet again. But I urge you to make the most of those few minutes. Take the time to really listen and respond. Sure, it is easy to get distracted by kids or even the hustle and bustle in the background of the call, but this may be your one chance to connect all day. Make it count. Really listen. Say "I love you."

4. If you have kids, prepare to do most of the parenting.

It's funny to watch old TV shows and see the moms threaten the kids with, "Wait until your father gets home!" Boy, that line wouldn't work around here. My kids would probably like it. They would just be waiting and waiting, ha! The truth is, the majority of parenting falls to me, as I am with the kids full time. Sure, I consult my husband on bigger issues, but day to day discipline, activities, appointments, and routines are my responsibility. When we decided to have kids in med school, I knew that this would be the case. Make sure you are okay with this before starting a family.


5. Recognize the sacrifices that you are both making.

We are both exhausted. The end of fellowship is near. It's been a long, ten year journey. While I recognize the countless hours of endless studying and operating that my husband has put in, he also recognizes that being a full time parent to three kids is a 24/7 job. I (gladly) gave up my career to raise our family while he is in training. We recognize that we would not be where we are today without each other. Somehow we found a way to mesh medical training and family. It can be done. But don't forget the "thank yous" and "I love yous" along the way.

Pumping for Your Preemie

A mere 3 hours after enduring the most terrifying night of my life, when my daughter was delivered at 27 weeks gestation, I pulled the Ameda hospital pump over to my bedside and pumped for the first time. It was a ritual I would continue every 3 hours for the next 79 days. Over 600 pumping sessions yielding over 3,500 ounces of milk.

Luckily, I was experienced at breastfeeding and pumping. My oldest nursed for 15 months and my second child for 19 months. I cringe to think of what pumping after giving birth to a preemie would have been like had it been my first child. I remembered the pump settings that worked best for me, how much hand expression helped, and other practical aspects that made it easy to get started. Most of all, I knew that the sooner I pumped after giving birth, the sooner my milk would come in.

The act of pumping was easy for me. The emotions that came along with pumping for a baby born much too soon were difficult. It is said that NICU moms leave the hospital with empty arms and aching breasts. Instead of a warm baby to snuggle and feed at night, a NICU mom gets a cold, hard piece of machinery. Far too often in the middle of the night, I would swear that the rhythmic sounds of the pump were speaking to me. And they were saying, "You suck! You suck! You suck!"

I remember visiting the NICU for the first time in the middle of the night, just hours after my daughter was born. After speaking with the neonatologist, I realized that one of my most important roles would be to provide my daughter with her mama's milk. The doctor told me that there was nothing better for her; nothing could be created in a lab to replicate what my body could give her. And that is when my Type A personality kicked in. I needed to feel like I had a part in her recovery. NICU parents often feel helpless as they peer through an incubator at a baby covered in wires and tubes, cared for by doctors and nurses.

I began to mother her by doing something no one else in the world could. Before I held her at 5 days old, she was already receiving my milk. She only needed a tiny amount. A day's worth for her was one feeding for a term baby. Still, I brought in syringe after syringe at first, then bottle after bottle, until my freezer space at the hospital was full. Don't bring any more milk for a while, they said. I smiled, and my heart swelled with pride.

I no longer looked at my pump with dread and disappointment. It was a tool that was helping me do my part to heal and nourish my daughter. We were a team. I passed the time while pumping by reading every article I could about premature birth. Many touted the benefits of breast milk. Instead of always feeling sad and angry, I channeled my feelings into the one thing I could control. Plus, pumping was not my end goal.

When my daughter was 54 days old, I was able to put her to the breast for the first time. And it happened. One of the best moments of my life. She latched on. I pretended for a second that we were transported back in time to the night she was born. I imagined that she had just been handed to me, all slimy and new, to nurse right away. That vision lasted only a moment, yet it made me so thankful that I had been able to pump so that the milk would be there when she was strong enough. And it was.

Fast forward and my daughter is now 7 months old. With lots of patience and work, she is now exclusively breastfed and thriving. I know that pumping is hard, sometimes painful, and just plain not fair for NICU moms. But I can say that it was very healing, at least for me. With a birth where so much went wrong, at least there was something I could do right. Pumping allowed me to keep my milk flowing until I got my daughter to the breast.

It's hard. Sometimes it hurt. I did it. Now, as I nurse my daughter to sleep, it is all a memory...the pumping for preemie.


What worked for me:

1. Pump soon after giving birth, ideally within 3 hours. Nothing will come out at first. Totally normal. Do it anyway.

2. Pump often, at least every three hours. Do NOT skip pumping sessions.

3. Rent a hospital grade pump. I used an Ameda. Even though our insurance provided me with a pump, I still recommend using a hospital grade, especially if you are separated from baby.

4. Learn how to do breast compression by reading articles and watching video clips. I got colostrum doing this a few hours after giving birth and was able to take it down to the NICU. Nothing was coming out with the pump yet.

5. Let your baby's nurses know that you will always need a pump when you are visiting, and pump by your baby's bedside.

6. After a few weeks, I spaced pumpings during the day a little closer together to give myself a somewhat longer stretch of sleep at night. Getting a 5 hour block of sleep when my baby was in the NICU actually helped my supply. I always made sure to still get in 8 pumps per day.

7. Do kangaroo care as often as possible. As soon as my baby was able, I let her nuzzle at the breast. I would always pump first. If my daughter did latch, I did not want her to choke!

When Fellowship Year Finds You Living Apart

This summer my husband and I will celebrate our tenth wedding anniversary. We got married the month before he started medical school. Our journey is not complete yet. He is currently doing his fellowship, which is great. It's the last step before he gets to begin practicing! It feels so close to the end of this journey; however, this year has turned out to be the most trying of them all. Forget intern year and not seeing him for days at a time. Now, we see each other once a week, maybe less if he is on call. You see, my husband is doing a fellowship 500 miles from his family. That's right, we are living apart. Throw 3 kids in the mix, one of whom was born three months early, on the second DAY of his fellowship YEAR, and just writing this sentence makes me wonder how we are doing it!

Our situation intertwines the rigorous world of medical training with the challenges of a preterm birth. We were planning on all moving during fellowship year. He matched in a fun town with plenty of entertainment for kids. It was going to be a year long, fun filled family adventure, during which we planned to welcome another child, as I was six months pregnant when he started. To make it easier for me, my husband moved a week earlier than the rest of the family, to get everything set up and ready. He would come back the next weekend and we would all drive down to begin the fun. Unfortunately, that never happened. I unexpectedly went into labor 3 months early. I called my husband, and he frantically made the 7 hour drive and arrived shortly before our daughter's birth.

Plans change. Fellowships continue. Marriages grow. With our daughter's birth and subsequent 79 day hospital stay, came unimaginable challenges. She would be medically fragile, even after discharge, and could not travel for several months. There would be no family move. We faced a choice about what my husband should do about fellowship. If he went back to finish the fellowship, I would be left alone to deal with a baby in the hospital, as well as two kids at home. If he quit, he would no longer be able to accept the job that was already lined up for next year. We both knew he had to finish the fellowship for the long term good of the family.

So, when my two pound daughter was 5 days old, I drove my husband to the airport and tried to assure him that he was doing the right thing, I could handle it, we would be fine, etc...But as soon as he was gone, I did, of course, cry my eyes out. I was angry that I had my daughter so early and that she was on a ventilator and struggling to live. I wondered how much more this medical school, residency, and fellowship journey could ask of me. How would I parent my older kids without him? How could I face going to the hospital alone each day? What is something terrible happened and he wasn't there?

My mind took me to unimaginable places, but at that moment, I made a conscious decision to put one foot in front of the other, and carry on. Sure, I thought it would be easy to tell him not to go, and my husband would have done whatever I needed him to. But I thought about the past 9 years, everything we had sacrificed to get to this point, and if we wanted it to pay off, he needed to finish this last leg of the journey. Plus, the practical part of me realized that our health insurance was through him, and we needed it big time. So on that drive home from the airport, I let it all out, and it was UGLY! Anger, fear, uncertainly, I let it all drip down my face in hot tears and escape my body in audible cries. I needed it all out so I could face the coming days, weeks, and months with strength.

About five miles from home, I dried off my face. My 6 and 4 year old were waiting at home with their grandmother, and with everything that past week had thrown at me, I knew it must be even more scary for them. Summary of their week: Surprise! Baby sister is here way too early, and we can't take her home for a LONG time. Oh, and we aren't moving anymore. Daddy is going to be living separately. Pretty confusing for kids, huh? I knew I must be their strong spot and make it seem okay, even if I wasn't really sure myself.

I pulled into the garage, walked into the house, and told them that daddy blew kisses from the plane and would be back next weekend. Baby sister was fine. They were very brave, and we would get through this.  I carried on as usual: Bath time! What do you want for dinner? Bedtime in 5 minutes! All the while with the weight of the world on my shoulders, my heart in the NICU, and my husband far away.

I thought about us 9 years earlier, at the beginning of his journey to becoming a doctor. We were so young. I had no idea what it would take of me, my marriage, and eventually my children to get through it. I hope to be able to say it was worth it some day. I pray that my husband is blessed with a successful career and is able to help many people, medically and otherwise. I hope my girls understand that their daddy loves them so much that he would do whatever it takes to give them the things they need in life and how much he cares about helping others. Perhaps that will soften the stings of the missed school activities, dance recitals, and bedtime hugs and kisses.

While I don't recommend living apart during fellowship year to anyone, I can tell you that I no longer take my husband or children's presence for granted. Sure, there will be long hours in the future and call nights and all the other things that go along with being married to a doctor. But complaints about that all seem so trivial, especially with what we have been through with our daughter. When you have had a sick child, it changes you. I will never go back to the person I was before. The 22 year old girl who started this journey is gone, and a 32 year old woman and mother will finish it.

What Not to Say Post NICU

Plenty of posts exist suggesting things not to say to current NICU parents. But what about when baby goes home? Believe me, the questions keep coming! People seem somewhat less restrained now that our 27 weeker is home. I believe that most people have good intentions, and if you have never walked this walk, it is difficult to understand how certain questions or comments could be taken the wrong way. Here are things NOT to say to the proud parents of a NICU graduate:

1. What was the total of the hospital bill?

Really? Our daughter spent 79 days struggling for life, and you are concerned with money. Everyone knows that hospital stays are not cheap, especially when they last 11 weeks! My answer to this question tends to be "priceless." When you ask about hospital bills, it feels like you are putting a price on our baby. I mean, I don't go around asking friends with new cars exactly how much they cost! I realize people may honestly be curious, but trust me, it's just plain rude. Keep all comments about finances to yourself. If the parents want to talk about it, they will.


2. Is she doing (insert milestone here)?

Again, I know people may mean well when they ask if L is smiling, rolling over, sitting up, etc... However, I cannot possibly get you to understand how much worry and pressure parents of premature babies feel (obsess?) about these things. It feels like your baby is constantly being watched and judged. I find that few people really understand "adjusted" age when it comes to milestones. When I am in public and strangers ask L's age, I just say 3 months, even though she is 6. I don't have the time or energy to explain. Trust me, my baby has enough doctors monitoring her every move.

3. She's so small! My baby weighed (insert giant baby weight here).

Okay, this is the one that gets me. My second child weighed 10 pounds at birth. I have experienced a big baby. But people should know that although my daughter is small (relatively speaking) for a 6 month old, she looks absolutely huge to us! If you have never seen a 2 pound human being, you cannot possibly understand how much progress she has made. People seem to think that all preemies need to do is grow after they are born. That is often the last concern. She has overcome the vent, cpap, nasal cannula, feeding tube, PDA, brain bleed, blood transfusions, PICC lines, infection, and the list goes on and on...

4. So, everything's good now?

This was said to me last week at my older daughter's preschool. It was meant with the best of intentions. It is very hard sometimes to step away from all I have learned over the past 6 months, and realize that the general public understands very little about the ramifications of prematurity. Hell, I was one of those people not so long ago. They catch up by age 2, right? Most people seem to think that when you come home, that means that the hard part is over, but for some it's just beginning. Many preemie parents won't be able to answer this question for years, and some not at all. It also suggests that things are only "good" if your baby has a perfectly clean bill of health, and while that would be fantastic, the definition of "good" to preemie parents could simply be the fact that we got to take our babies home. We saw some families that were not so fortunate.



5. You don't plan on having more children, right?

I'm so glad that some people feel the need to come into my bedroom and make decisions for me and my husband. We clearly need help, thanks. While this does happen to be our last child, I want people to understand how this statement makes a couple, particularly the mother, feel. It suggests that something was done wrong that led to a preterm birth, that the woman is defective and this situation is so horrible, that it would be irresponsible to risk repeating it. The cruel thing about premature labor is that in many cases, such as ours, there is no known cause or warning that it is going to happen. Just the week before our daughter was born, I received a glowing report from my doctor and was told I was on "cruise control" until the birth.


What should you say post NICU:

1. I've been thinking about you.
2. I'm here if you ever need to talk.
3. Sometimes actions speak louder than words. A card, meal, or other small gesture can mean the world.
4. What a little "ass kicker!" This is probably my favorite, and if you are a fan of The Walking Dead, you know this is what they called baby Judith. Trust me, preemies who make it home are ass kickers in every way. My daughter has been through more in her short life than me and the other adults in my family combined! Let the family of a preemie know that you recognize just how strong their little miracle is!

When NICU Dad is Also a Doc

I remember watching my husband over the course of our daughter's 79 day NICU stay. Born at 27 weeks, and just over 2 pounds, she was covered in wires and tubes and the beeping of machines were the lullabies played in her hospital room. As terrified as I was as her mother, I could sense that my husband was dealing with a feeling of helplessness that he had never experienced.

You see, my husband is an orthopedic trauma surgeon. He fixes people in these dire situations. Give him an OR, and he will use whatever screws and plates are necessary to piece together broken bones from car crashes and other unimaginable accidents. He didn't know how to help our daughter. He wasn't trained for that, and it killed him inside. This picture sums it up:

He could only stare at her and will her to fight this battle. If ignorance is bliss, his medical knowledge was torture. With every brady or desat, his mind would take him to the worse possible scenerio. Was she getting an infection? Did she need more respiratory support? Did her belly look swollen? NEC? Finally, instead of trying to solve her problems medically, I watched my husband transform from doctor to daddy, and all of a sudden, there was a lot of this going on:

His heartbeat and body heat could do what 4 years of medical school, 5 years of residency, and a year of fellowship could not. Father and daughter, skin to skin. She was his baby girl who needed him as daddy, not doctor. And with that, they both began to thrive.