Thursday, March 27, 2014

Comparison: The Thief of Joy

The story of two mom’s and their struggles with Comparison

“I remember waking up in the recovery room after my traumatic labor (but that’s an entirely long and different story) and wondering what was happening with my son. I knew I was having a boy and I knew things weren’t going to be what I imagined the moment they told me I was in labor at 24 weeks gestation. I remembering being wheeled in to the NICU and seeing my son and all the other babies in there (each room had about 12 babies). I was flooded with emotions seeing my son so tiny and bruised from the delivery hooked to what seemed like a million wires and tubes. I remember thinking, am I doing the right thing, will he survive, and if he does will he live a meaningful life? I remember being wheeled to my room crying and wishing this was all a dream. 

The first couple days of our 144+ NICU stay were tough, I remember seeing mothers holding their babies and babies that seemed so much better off than my son. I found that looking at all the baby’s incubators and tags that said their birth weight and gestational age on them made me start comparing my child to these other babies. I was told on numerous occasions not to look at the other children and compare because each NICU journey was different. For the first 2 months of our NICU journey I found myself comparing my son to many children, but there was one in particular that I compared him to, and it was almost as if I held my son to this standard that he better be doing as well as this child was. I met this child’s mother in the NICU waiting room and found that just like my son her son was born at 24 weeks gestation as well, only two week prior to mine. So when I saw her holding her son the first time I met her which was day 2 of my NICU stay I was falsely led to believe I would be holding my son by two weeks. I was sadly mistaken; I didn’t get to hold my son for over 3 weeks. My son ended up having so many complications where her son seemed to be excelling at everything. 

This was devastating and heartbreaking to me. I found that instead of being happy for the milestones my son was reaching I was holding him to some sort of standard I created based on my (now) friend’s son. I watched mother’s including my friend take their children home before I got to take my son home. This made me depressed and actually robbed me of the joyous milestones my son was making; such as breathing on his own, suck/swallow/breathing for feeding, going through the night without an apnea spell etc. I was guilty of what most parents are, comparing our children to others. It wasn’t until he was moved into what they call the growing room (less critical/critical care) that I realized how bad I was. 

Days and then weeks went by and all the babies around me were going home. On my last week there his nurse finally told me, listen you know he is going to come home with you and this is something you didn’t know months ago, you need to stop comparing him to other children and be content and happy that he is coming home, and you need to know that he will do everything on his own time. This really helped me as my son came home and I realized that other kids were and probably will always be ahead of him in development. He is now 4 and is a happy child, he may be way behind his peers but he is perfect to me. I no longer compare him to my friend’s children and I am much happier this way. Comparing your child to other children no matter what their issues are is truly the thief of joy. “
Written by: Heather Lonardo


My daughter started out as one of a pair. I lost her brother at 14 weeks. Truthfully, his loss was probably the only reason why I got to keep one instead of losing both later. But this doesn’t stop me from feeling the green monster of jealousy every time I see or hear about twins. I think about how I could have managed it. I have plenty of love to give two babies. Why couldn’t I keep them both? 

And then I realize that my green-eyed monster is getting in my line of sight to my daughter and I have to stop, breathe and give myself a reality check.

Hope was born at 26 weeks and 5 days. Roughly 13 weeks early. She spent 99 very long days in the NICU at Women’s Hospital. I watched her attached to tubes and wires and undergo more tests and pain than any baby should ever have to be subjected to. I knew from the beginning that we would be there for a long time and I made myself available as a support person for other parents in our unit.  I tried to be uplifting and positive. But when they were only there for a few weeks or even a few days, I got discouraged. They were so lucky! I hadn’t done anything wrong as a person to be dealt this hand and my child certainly didn’t deserve not to be able to go home with her loving mother and father.

I saw moms and dads holding their children with confidence.  Hope was over a week old when I finally got to hold her, anxious every second of tearing free a wire or tube that was trying to save her life.  When we went home, there was oxygen tanks to contend with and a heart monitor. I carried around over 20 pounds of stuff when all I wanted was to snuggle with my baby. Other families got to take their baby out shopping and visit family. We came home right before RSV season when Hope couldn’t be exposed to any risk of sickness. The only place she’s ever been in the car was a doctor’s appointment. 

Hope will be 1 year old in just a few months.  Most of my friends have never met her in person. 

When I get down and discouraged over the fact that my pregnancy, birth and baby’s first year was nothing like I envisioned it, I just look at my child’s face, her healthy glow, her toothy smile, all that drool and the fact that she is here at all and I have to thank God that I have her. Our story may be nothing like the next person’s but it’s ours and I have a new perspective on luck and happiness because of it.


Written By: Heather Hunter

Wednesday, January 29, 2014

An Amazing NICU Story

By Doug Geisler-
Doug and his twin daughters Quinn and Riley


When my friend and colleague Mark Brislin approached me about writing a column for this site, I have to admit that I had my reservations.  Truthfully speaking, I am not sure why I was hesitant.  By nature, I am not really someone who shares personal details with anyone outside my family and friends.  In addition, I guess part of me thought the story was not all that incredible and that there would not be any value to sharing it.  As time went on and I thought more about the experience, I realized just how incredible it really was and that putting it out there for others would likely be helpful as they worked through their own pregnancy challenges but maybe also for myself as a reminder of just how lucky I am to have all my girls safe and healthy.  Beyond any of that, it really is a heck of a story so maybe it will just be a good read for some.



My family’s story begins in October of 2012 when my wife and I went in for our second of what would ultimately be about 50 ultrasounds.  This trip was a routine check-up but ended up being anything but that.  Shortly after the ultrasound tech fired up the equipment, she said, “There they are.”  What she didn’t know was that we had no idea we were having twins until that moment.  Needless to say, it took me a few minutes to pick my jaw up off the floor.  My wife and I were thrilled as we had always wanted two children.  I guess we just never imagined it happening at once!



Fast forward about a month later and we were told that we had a very unique and potentially dangerous scenario on our hands.  We were told the twins were monoamniotic.  In normal identical twin pregnancies, a thin membrane forms to separate the twins; less than 1 percent of U.S. twin pregnancies are monoamniotic (about 1 in 10,000 twin pregnancies).  The membrane acts as a protective layer between the babies.  Cord entanglement and compression and resulting blood flow problems kill 20 percent of twins with this diagnosis, hospital officials said.  In addition to the high mortality rate, birth defects were very frequent with this type of pregnancy.  As a result of the condition, my wife would have to have weekly ultrasounds to check for cord entanglement.  The scary aspect of this diagnosis is that there is very little that can be done if the cords become entangled besides attempting delivery, and as I am sure all followers of this site know, delivery before a certain gestational age comes with great risk. 


At my wife’s 25 week check-up, the doctor noticed a small amount of entanglement and decided to have her admitted.  This was after one month of bed rest at home.  She would spend the rest of the pregnancy on bed rest in a hospital in Boston.  Over the course of the next 7 weeks, she would have to have hour long tests 3 times per day (5 AM, 1 PM and 10 PM) to make sure the babies hearts were still beating at an acceptable rate.  A decreased heart rate indicated potential cord entanglement and reduced blood and nutrient flow through the umbilical cords from the placenta.  As we quickly found out, these “hour” long tests often stretched to two and sometimes three hours because the babies’ heartbeats could not be consistently monitored because they were so active in the womb.  This, along with a steady string of visiting doctors and medical students and the pains that go along with pregnancy made my wife’s efforts to get rest basically impossible. 



Our collective goal was to reach 34 weeks before delivering.  The doctors felt that if we made it this long, any complications the twins might have would be manageable in the NICU but waiting any longer would put them at much greater risk of serious cord entanglement.  However, at several times during the hospital stay around the 29-30 week time frame, my wife was rushed to the delivery floor because it appeared that delivery was imminent.  Three separate times the doctors were able to hold off delivery and she was sent back to her normal room after overnight stays on the delivery floor.  During this time, my wife started to have severe back pain.  Now, keep in mind, I have known my wife for 6 years and have literally never heard her complain.  She didn’t complain or cry once during her hospital stay…not once.  Rather than complain or feel sorry for herself, she has always simply practiced positive thinking and endures until things improve.  She is about as tough as they get so for her to even mention pain to her doctors, it had to be serious.  At the time, the pain was dismissed as being relative to the pregnancy and the additional weight she was carrying.  Of course, we knew no better and accepted this answer as it seemed very logical.  This back pain steadily got worse and the doctors recommended physical and massage therapy after the delivery to help improve it.  Again, we accepted this as it all seemed to be just another small hurdle in the pregnancy process. 


Fast forward into week 31 and we were told that due to the recent complications and the inability to hold off Keli going into labor much longer, they would need to deliver the twins that Friday, which would have been the first day of week 32.  So, all things considered, although we didn’t make it to week 34, we did make it through some scares and dodged a few bullets with the trips to the delivery floor. 



So, that Friday, March 22, 2013 my identical twin daughters Quinn Marie and Riley Grace Geisler were delivered at 9:22 and 9:23 AM, respectively, through C-section.  Miss Quinn was 4 lbs. 3 oz. and Riley was 4 lbs. 2 oz.  We were told before the procedure that their lungs would be too immature to allow them to cry, but with their first breath both of my daughters let everyone know they had arrived and screamed at the top of their lungs.  They were the two greatest sounds I had ever heard.  And, I suppose I lied to you earlier.  My wife did cry once in the hospital.  She cried when she heard her daughters cried…but I think she earned that one. J


After the delivery, I was able to get up and walk from behind the curtain that they put up and see the girls for the first time.  Not unlike a normal delivery, they had teams of nurses working on Quinn and Riley to get them cleaned up and to make sure they were stabilized.  After a few minutes, they were both hooked up to CPAP machines to assist with their breathing and put into isolettes for transfer to the NICU.  While the girls were being taken away, our doctor asked us both if we wanted to see the umbilical cords.  I jokingly replied “No, I made it through this thing without passing out so I don’t want to push my luck.”  She then gave me a look as if to say it was a rhetorical question and you need to look at it to understand why we had to put your wife through what we did and just how lucky we were that the girls were born healthy.  So, she showed the cords to us both and it was basically a mangled mess of knots.  There was over 150 years of collective delivery experience in the room at the time and every single one of the delivery team said they had never seen cords so badly tangled where both twins survived, not to mention with no type of permanent damage.  The doctor said that because my wife had taken such good care of herself, had eaten well and followed all the doctor’s orders to a T that the cords were so well lubricated that the knots were never able to constrict.  I guess there is something to be said for the power of positive thinking after all. 



The next few days progressed as expected, with the girls continuing to gain strength and grow.  They ended up having no major issues at all and were removed from assisted breathing within 12 hours of being delivered.  They continued to have the common heart and breathing monitors as well as a feeding tube; all very typical support mechanisms for premature babies.  At the same time, Keli was recovering from the delivery in a room a few floors above the NICU.  The normal protocol was for the mother to have five days to recover in the hospital and then be discharged.  During those five days, we spent the days between Keli’s room so she could rest and walking down to the NICU to spend time with the girls.  All the while, Keli’s back pain persisted but we were given the same direction as before and referred to a physical therapist to see after discharge. 



Those 5 days were still quite intense, as any time spent in a hospital seems to be, but a great weight had been lifted off my shoulders knowing the girls were healthy, Keli wouldn’t have to go through any more hurdles and that it was really only a waiting game at that point until the girls were mature enough to come home.  They estimated about two months for the girls which would have basically put their discharge date at their original expected birth date.  So Keli was discharged the following Tuesday and we went home so she could start getting back on her feet and back to normal.  We visited the girls daily for the next week or so.  Then, on the morning of April 7th, I was working on a project in the garage and just trying to clear my head a little bit.  Our plan was to take it easy that morning and then go see the girls in the afternoon.  Keli had not really been herself since checking out, but considering all she had been through mentally and physically over the last few months, I just chalked it up to over-exhaustion and the need to just get some serious rest.  So her plan was to take it easy on the couch that morning.  I had been out in the garage for about an hour when she came out and said she couldn’t breathe and that her back pain was too much to take.  The last thing I wanted to see was the inside of a hospital again, but I knew something was up so we jumped in the car and headed for the closest ER.  Unfortunately, we live about 40 minutes northwest of Boston so we had to go to a different hospital than the one in Boston where the girls were.  We spent the typical hour or so waiting in the ER until she was admitted.  Once admitted, the doctor ran a battery of the typical tests and drew some blood.  Waiting for the results took a few hours and then we were moved to another room where we waited a few more hours for anything tangible.  The doctor basically said he had no clue and advised that Keli needed to be airlifted back down to Brigham and Women’s Hospital in Boston.  As you could imagine, at this time, I had about enough of the waiting game and was at my wit’s end with anything resembling a doctor so I pulled him aside and told him that, considering he didn’t know what it was, it seemed that airlifting her was a little over the top and could potentially cause issues with her breathing, etc.  I asked him if she was in imminent danger, and if not, that we’d take an ambulance.  Amazingly, he agreed and about 45 minutes later we were on our way from Lowell General Hospital back down to Boston.  The only silver lining here was that at least we’d all be in the same hospital again as this is where Riley and Quinn were.  I remember clocking it and it took 23 minutes to get from Lowell General to Brigham and Women’s (pretty odd the details you remember under stress).  Check it out on a map.  Pretty impressive driving!



At that point, it was around 9 PM once Keli got settled in a bed in this ER.  We had a handful of doctors and an incredible nurse in and out for the next few hours.  Around 1 AM they came to the conclusion that they really had no idea either and re-admitted her into the hospital for an overnight stay.  The doctors had what they thought was possible evidence of tuberculosis so they actually quarantined her and I couldn’t enter the room without a mask and some other protective gear.  Personally, I found this awfully ironic since they put her back on the same floor she was originally on with the other pregnant women.  It just seemed odd to me that they would risk the health of the other women.  In hindsight, I think they were actually just completely stumped and gave us something as a possibility to placate us.  Maybe that’s just the skeptic in me…who knows.  I spent that night bouncing between Keli’s room, the NICU and making phone calls to our family to let them know what was going on.  Luckily, Keli’s parents and my sisters live close so my sister went and took care of my dog and the house while Keli’s Mom made her way into the hospital.  The next morning, what would turn into a seemingly endless stream of doctors, began showing up and asking “where does it hurt?”.  By the end of day one, Keli had given over 30 vials of blood for testing, had pretty much lost her strength to the point that she couldn’t make it to the restroom without my help and we had seen at least 12 doctors, all asking “where does it hurt?” …but no answers about what was going on.  Much of the same continued for the next 3-4 days.  My mother came into town to hold things down at my house and I had been in the hospital with Keli since we checked back in.  I saw no point in going home since my whole family was in the same hospital.  The time I spent with the girls was a bright time during an otherwise miserable time. 



We had gotten to around day 6 or 7 of doctors coming in continuing to ask “where does it hurt?” when I politely asked the doctors to stop asking that question (well, I thought I was being polite but chances are that by that point my patience had gotten the best of me and my manners).  Keli had gotten to the point where explaining her symptoms was taking so much out of her that she could barely make it through without needing oxygen.  The problem was, the doctors had no idea what was going on, so they had to send in different doctors from different functional areas which required Keli to start the story from the beginning each time.  My request seemed to have some impact as they started to communicate a little better with one another after that and reduced the redundant questions.  A few more days into the process, they moved Keli to another wing of the hospital.  The hospital was basically two towers.  Keli was moved to the opposite tower so I would bounce back and forth between her room and the NICU from then on.  When they moved her, they finally got to the point of X-raying and taking MRI’s of her back.  When they came back, it was clear that she had a large growth on her spine and fluid in her lungs.  Both of these issues were contributing to her breathing issues.  After a few more days of deliberation, it was determined that they would need to biopsy the growth as the doctors feared it was lymphoma.  The problem was, it was so close to her spine that no spine surgeons would touch it and the aorta was running right next to it so no coronary surgeons would touch it.  The only doctor that had experience with this sort of thing was on vacation and they didn’t call him so there was another few days of waiting and worrying to deal with.  Each day, Keli was given morphine for the pain and gave over 30 vials of blood for testing.  All the while, she was not allowed into the NICU to see the girls, which was probably the most difficult thing for her.  The NICU nurses were some of the sweetest people we’d met through this whole ordeal though and arranged on a few different occasions to bring the girls to her.  Not enough can be said about the nurses in that hospital.  They treated Keli, my girls and I like family and were our daughters’ advocates while they were in the NICU.  They were simply amazing. 



The following Monday (April 15th), the doctor who was on vacation was back and visited Keli in the morning around 10 AM.  This doctor was amazing and had a certain quality about him that put you at ease immediately.  He actually apologized profusely that the hospital didn’t contact him and was not too happy at all that we were left to worry about the biopsy procedure.  He indicated that he had performed similar procedures hundreds of times and that he could get to the growth with practically no risk.  It would take him about an hour and he cleared his schedule the following morning to do it promptly at 6 AM.  He said he could not speculate what the growth was but that he could get to it safely to extract some of it for biopsy.  That consultation took about two hours.  Afterwards, Keli was wiped out so I let her be for a bit and tried to fit in some lunch in between work responsibilities (I was lucky enough to work from the hospital during all this.  I decided not to take time off since I would probably need it when the girls finally got out of there and I really needed something to concentrate on to prevent me from losing my patience with more doctors J).  I came back to Keli’s room around 3 PM to find her still asleep so I decided to go visit the girls.  As I mentioned, the hospital is two towers, so you had to go down one elevator to the main floor and then catch the other elevator a few hundred feet away to the other tower to go to the NICU.  As I boarded the elevator on the 11th floor, a woman was talking on her phone to someone who I gathered was her daughter.  The call seemed very frantic and I tried to ask the woman if she was OK or needed help but she looked like she had seen a ghost.  She hung up shortly after and said “we were just bombed”. 



Considering the woman’s justifiably frantic demeanor, I sort of dismissed her comment.  I thought she was confused or had misinterpreted her daughter so it just didn’t register what had happened until a few moments later.  When the elevator doors opened, she quickly rushed out and I slowly followed.  I had come to find the walks between rooms were somewhat peaceful considering all that was going on with my family, so I always took my time and used it as an opportunity to compose myself before I went into the NICU or Keli’s room.  Unfortunately, this walk was anything but peaceful.  To get to the other elevator, you have to walk past the ER entrance; a roughly 60 foot hallway between where the ambulances pull in and the indoor ER entrance.  As I approached that area, I encountered multiple bombing victims being wheeled in by EMS personnel and ambulance after ambulance pulling in.  I had never seen so much blood and misery in my life.  I have been lucky enough in my lifetime to not see the horror of war or any type of significant trauma firsthand so this was an absolute shock to me.  I have always been in awe of soldiers and support personnel who put themselves in harm’s way to protect others and, I have to say, that admiration is only stronger today.  I couldn’t imagine having to deal with that type of suffering every day. 



At that point, I was really in somewhat of a daze trying to figure out my next move.  Fact of the matter is, despite the long odds my daughters had just recently beaten to be born healthy, at the time I was still very much a pessimist and someone who always looked at worst case scenarios.  So as I put the pieces of the puzzle together in my head, I came to the conclusion (right or wrong) that this was likely the act of terrorists and possibly not the only attack that would be carried out that day.  It was a pretty awful feeling knowing that this had occurred so close to the hospital and that my wife and girls were separated by the two towers.  I remember thinking that I was lucky Keli was asleep because if she knew what was going on, she probably would have ripped all the wires and IVs out of her arms and ran to the NICU to be with her daughters (yeah, she’s that kind of Mom. J).   So I decided to head up to the NICU to be with the girls.  The next hour or so was admittedly not my proudest time of this whole ordeal.  I realized when I got to the NICU that it was the only floor in the hospital that you could access from the street without passing security.  There was only a receptionist outside the NICU between the outside world and all the babies.  You could, and most people do, access the NICU from the second floor.  Coming in that way, you don’t have to pass the security guards and sign in on the first floor.  So, call it protective instincts, call it letting the stress of the last 3 months or so come to a head and giving the security personnel a piece of my mind about their obvious hole in safety given the current situation, but I refused to leave the NICU door until they put a guard on it.  Long story short, after about 45 minutes of lacing into the Director of Security, I was “politely” asked to leave (Ha…who am I kidding?  They tossed me out for making a scene!).  I left with the help of a very large security guard who I saw very little value in disagreeing with.  I did find out later that they put a guard on the door for the rest of the day though, so I have little regret about my actions on that front (although I will admit I could have handled it with more tact.  Oh well, stress got the best of me but my daughters were safer because of it so it is what it is).  I was told not to come back to the hospital in the next 24 hours.  At the time, I couldn’t care less.  I did what I thought was right.  Additionally, I had gone to college right down the street so I had a few buddies that were local.  I figured I would just crash at one of their places and then quietly re-enter the hospital early in the morning to meet Keli for her procedure.   Problem was, all cell service was completely blocked because of the attacks and I couldn’t get through to anyone so I just decided to figure a way back into the hospital.  Within an hour or so of the bombing, the hospital was not letting anyone back in without proof they were there to see a bomb victim and since it was next to impossible to prove that, they really were not letting anyone in.  The entire outside of the hospital was swarming with FBI agents and reporters.  (I was asked 5 times over the next two days for an interview because they thought I was there for a bombing victim.  The last thing I wanted was to be on TV so I just walked away.)  I cannot remember exactly what I said, but I must have come up with a few pretty good lines because they did indeed let me back in and I was back in Keli’s room with her by about 5:30 PM.  When I explained to her what happened and why I was asked to leave, she was not very impressed with me but understood my position and respected my need to get a guard on the door (another wonderful thing about my wife – she may not always agree with my approach, but if my heart is in the right place she will always support me).  We tried to spend the rest of the night focused and preparing for the procedure the next morning.  I decided to cut my losses and not go back to the NICU until after the procedure.  I don’t think either one of us got much sleep that night and, before we knew it, there was a team in the room around 4:30 AM to take her to get prepped for the surgery.  The surgery was in the bowels of the hospital.  The bottom two floors in the hospital were underground and one was dedicated to surgeries.  The procedure would require the doctor to make an incision about three inches long under her right armpit and basically go through one of her lungs to get to the growth.  Without going into too much more detail, the surgery was a success and Keli woke up shortly after on a high that she seemed to be enjoying quite a bit.  Apparently they gave her some pretty powerful painkillers or sedation medicine because she was hilarious for the next few hours.  Not that I should have been laughing at her but I think that laughter was badly needed by both of us so we just went with it. 



A few hours after the surgery, we were told it would take a day or so to get the results so it was back to a waiting game.  I continued my travels back and forth between the NICU and her room.  On my first visit back to the NICU, I was expecting to be given mean stares and not open arms.  I could not have been more wrong.  The receptionist got up and hugged me when I came off the elevator and thanked me for sticking up for the babies.  Several of the nurses did the same.  One of the nurses that had been assigned to Riley and Quinn had become very close with us and hugged me and gave me that look like your Mom did when you were a kid when did something that she was not too thrilled with but was proud of you at the same time for standing up for yourself.  I gained a huge amount of respect for the people in the NICU that day.  They knew I added more chaos to an already chaotic situation but had enough compassion to see that I only meant well and just let by-gones be by-gones and moved on.  By that time, the girls were making real progress and had been off the feeding tubes for several days so I was able to feed them and bathe them when I was there. 



On Wednesday of that week, we got the biopsy results and were extremely relieved to find out that it was some type of non-malignant growth.  Although we were relieved, we still did not have clear direction from the doctors about what it could be but they did give us some indication that they were narrowing it down.  They came back to us Thursday morning with a definitive diagnosis.  They narrowed it down to a disease called Wegner’s granulomatosis, which is a form of Vasculitis  (inflammation of blood vessels) that affects blood vessels in many organs including the kidneys and lungs and often gives the patient severe joint pain among other symptoms.  If untreated, the patient’s major organs will shut down for good.  There is no direct cure but long-term immunosuppression can keep it at bay indefinitely.  The occurrence I have most frequently read is roughly 10 in one million people are impacted by this condition.  So, Keli would need to begin a chemotherapy treatment immediately with a drug called Rituximab along with heavy doses of steroids and other drugs in pill form.



Ironically enough, the city was put on lockdown that afternoon as law enforcement in the area tried to track down the bombing suspects.  As a result, there had been so many call outs from the nurses who rely on the public transit system that there was no one available to administer her first round of treatment.  What’s one more night in hospital, right?  At that point, I knew practically everyone in the place anyway.  So I left Keli to get some rest, went to the cafeteria for what I hoped would be my last hospital meal, talked to some of my buddies who I’d become friendly with that serve food there and tried to make the best of it.  I went up to the NICU after that and hung out with my girls and then came back to Keli’s room around 10.  I just about lost it on that walk back to her room that night.  I think I was at my tipping point but reminded myself that we were closer than ever to getting out of there and just kept going.  One more night…


The next morning we woke up and were told that a nurse had been assigned to Keli’s treatment and would be in her room by 9 AM.  The treatment took about 5 hours and had to be administered by a nurse who is trained to deal with the side effects patients get with these types of drugs.  Luckily, and somehow not surprisingly, Keli handled it like a champ and never flinched.  She just became friendly with her new nurse and shared pictures of Riley and Quinn.  Once the treatment was over, the nurse told her she had to rest for about an hour and then she was likely going to be discharged.  About an hour later, the doctor that would ultimately be assigned to her long-term care came up and said she was OK to go home but under strict guidelines.  He gave us about 15 prescriptions to fill and he scheduled 3 more rounds of the chemotherapy treatment at a local treatment center in the coming weeks.  She would need to go through these, take about 25 pills per day and then have a second round of 4 more treatments 6 months later.  So, technically, we were discharged but he told us we were not allowed to leave because the city was still on lockdown.  This doctor was also a great guy and knew that we had both not been home in over two weeks and Keli hadn’t really been home for any significant amount of time in almost three months.  She missed her bed, she missed her dog and it was time to go home.  He gave me the look as if to say “I can’t keep you here if you can find someone to drive you home.”  So, I called my mother in-law who would probably spring Keli from jail if she had to, so a quick hospital breakout was no big deal.  I also figured that the chances of being stopped on the way home were slim to none since every police officer in the state was hunting the bombing suspects.  If worse came to worse, Keli’s family was loaded with cops so I figured they could explain it all for me.  I was just very torn about leaving our girls there, but I knew that I had to get one home at a time and Keli was the first to get the thumbs up so it was time to go.  We’d be back to visit the girls the next day.



Forty-five minutes later, I was driving down Boylston Street, past Fenway Park, past all the restaurants and bars that are usually starting to fill up on a Friday afternoon and there was not a soul to be found.  It was the eeriest feeling I’ve ever had.  It was as if Boston was a ghost town.  I counted the number of cars that we passed from the hospital until we got on route 93 (again, odd the things that you remember); the major highway leading home – 7 cars.  On a normal day, I would have passed 700.  I made it home in less than 30 minutes.  I was flying.  That drive on a typical Friday would probably take at least 2 hours because of traffic but there simply wasn’t any.  The whole area seemed to shut down.   I wanted to get my wife into her own house, her own bed.  I wanted to see my Mom who was still at my house because she knew I wasn’t leaving that hospital until Keli could come with me and she didn’t want me to worry about the dog or the house or the bills or any of the other things that mean absolutely nothing when you boil it all down.  I wanted to see my dog and just sit on the couch and try to start putting it all behind us and that’s exactly what I did. 



Keli and I continued to visit the girls nearly every day until they were discharged.  Some days Keli really couldn’t make it out of bed and I forced her just to stay home and rest.  It broke her heart but she knew she needed to gain her strength for when they came home.  Then, on May 18, Riley Grace was discharged and came home in a tank of an SUV I felt the need to buy after they were born.  That drive took well over an hour.  Not because of traffic, but because Dad couldn’t bring himself to drive over 50 miles per hour with her in the car.  And then, four days later, 111 days after we spent our first night in the hospital, Quinn Marie came home and we all slept in the same room for the first time in their lives.  Keli’s birthday was the next day so I think she got what she wanted!



You are probably asking yourself why it took me so long to write about this.  Well, truth is, I started drafting this column about four months ago when Mark first asked me to do it.  I got to the part about Keli going back into the hospital and, for whatever reason, never looked at it again until this week.  I knew it was unfinished and I knew I wanted to finish it, but somehow I just kept putting it off.  Well, I guess everything happens for a reason, because this week we found out that Keli’s treatment has been as effective as possible and has put her disease into complete remission.  The doctors see no sign of it in her blood work and she has been removed from nearly all medicine except a low dose steroid and a “maintenance” pill that she will take once a day for the rest of her life.  She still has joint pain on basically a daily basis but she manages that.  I’d like to think that my wife taught me something about the power of positive thinking and that I held off because I wanted to be able to conclude this story on a positive note.  Thanks to her, I can.  She fought tooth and nail to bring my daughters into this world and succeeded.  She fought tooth and nail to beat a disease that next to no one ever gets.  More importantly than all that, she is a wonderful mother who has not let this disease be an excuse for her at all.  She takes outstanding care of Riley and Quinn every day.  On days when most people wouldn’t get out of bed, she takes care of two amazing little girls who are now ten months old and as healthy as can be.  All the while with the same smile on her face that she had the day we found out we were having twins. 



So, you are probably wondering what the takeaway is here.  Well, that’s for you to decide.  If this story helps another family through their pregnancy or someone with a disease to persevere and smile through it then I think it is worth the time I put into it.  If it was just a decent read for someone sitting on the train on their way to work, that’s just fine too. 



For me, although I would give anything in the world for my daughters to have been able to come home right after they were born or for Keli to not have gotten sick, it may very well have been the greatest thing that ever happened to me.  It was in no way fun or enjoyable.  It was quite simply the opposite but it allowed me to gain tremendous perspective on the things that are truly important in life.  I think I have become a better husband, a better friend and hopefully a better son and brother because of all this.  I do a better job of prioritizing what really matters and letting go what doesn’t matter.  I never let my daughters go to bed without saying I love you and spend as much time as I possibly can with them.  I like to think those are things I would have done naturally, but I simply don’t take for granted that I will always be able to do them so I take advantage of the time I have today.  I don’t wait until tomorrow.  The last thing for me that I have to say changed is that my wife turned me into an optimist.  I think as positively as she does.  I am not a religious or spiritual man at all, but if you look at the collective odds of my family coming out of this entire ordeal and all having a clean bill of long-term health, they were massively against us and the only thing that kept me moving through it all was my wife’s optimism and refusal to think negatively.  When they told her that her pregnancy would not likely end well, she didn’t cry, she didn’t want sympathy, she just did everything within her power to create a positive outcome and let Mother Nature run her course.  When they told her she might have cancer, she didn’t breakdown, she didn’t’ cry, she just waited patiently until they told her she didn’t.  When we had to sit in traffic at 5 AM to make a 7 AM treatment that she would waste an entire day she could have spent with her kids, she didn’t complain; she just dealt with it and made friends at the clinic while the medicine slowly dripped into her IV.  The least I can do is try to do the same.  Based on my experience, there is no downside to it. 

Monday, January 20, 2014

Get To Know Your New Admin

Name: Jordan Stowe

Preemie Stats: Adeline Marie Stowe was born May 1st, 2013. Now, our whole family has a May birthday. Her mother's is the 16th, and mine the 23rd. She was born at Women's Hospital in Greensboro, NC. Addie weighed an astounding 3lbs 12oz at birth. Aside from needing a CPAP at birth, her only issue was learning to feed and grow in the NICU. She would spend 29 days in the NICU. 

Favorite Sports Teams: I am an avid sports fan. My favorites are the Wake Forest Demon Deacons, Carolina Panthers, and the New Orleans Saints. 

How you found out about Papas: I found out about Papas through a friend of mine, Greg Cohoon. Him and his wife had a 29 weeker in the NICU as well.  He told me about several support groups that helped him the most. Papas Of Preemies was among that list. 

What is your role with Papas: I am starting to wear many hats. I am a regular contributor to the blog series. I am also the media director of Papas. I design, edit, and finalize most all videos put together by Papas. I am also an administrator on the facebook page and will be posting helpful resources for parents of preemies. 

What things are you doing in your community to support NICU families: Starting very soon I will be volunteering with Women's Hospital through the Family Support Network of Central North Carolina. I am unsure as to what those responsibilities will include, but anything to be able to give back and help support families in the NICU community.