Joyce’s Story: Life inside (and outside) the incubator

By: Josefa Chan and Joyce Chan

June 2014

From Josefa (Mom):

Joyce

As a mother of two preemies, I want to share my experiences with parents who are facing what I had gone through almost 21 years ago. My hope is that the story of my children may encourage them while they are facing difficult situations.

Flashback to 1993, and due to my severe pre-eclampsia and critical condition, I was rushed to Mount Sinai Hospital. There, I delivered my eldest daughter Joyce by an emergency caesarean section. Before the delivery, the pediatrician had told me what to expect with a three month premature baby: If my baby survives, she will definitely have a very rocky start, and there were the possibilities of brain damage, respiratory problems, and blindness.

Joyce was born three months premature at two pounds and seven ounces. Since her lungs were not well developed, I had delivered a silent baby. She was then quickly taken care of by the medical team and placed inside an incubator. It was heart breaking and scary seeing my miniature Joyce covered with different tubes, wires and monitor pads.

Joyce survived from bleeding lungs after surgery on her second day of birth. Against all odds, she gradually gained weight by grams, and took more milk by milliliters. She no longer forgot to breathe, and had fewer tubes and wires covering her body. And finally, I could bathe her in the famous salad bowl just outside the incubator. After two months, she graduated from the NICU, weighing four pounds. I am very grateful to have had one of the world’s best medical teams looking after Joyce, and from whom I had learnt how to take care of her at home.

The early years for Joyce were absolutely challenging, especially when she was hospitalized for very bad pneumonia. Trained by taking care of a little girl who got sick so often, Joyce called me “Doctor Mom”! Despite the difficult times, Joyce was a happy and intelligent baby; I remember she had called me Mama at eight months old corrected. Now, she has grown up into a healthy and smart young lady with a big heart.

As a mom of a preemie, there were moments of anxiety and emotion: Will my baby girl be alright? Will she forget to breathe again? How will I produce enough milk for her? When people stared at me and my small baby, I wondered why they did not ask me for the real story, instead of forming judgments. Even when she was brought home, the questions continued. Will Joyce get pneumonia for the fourth time if I let her play in the snow? Will she stand up for herself if she is bullied at school? I do not know how many nights my pillow was wet with my tears.

Of course, there were also countless joyful moments: When Joyce cried for the first time; when she always giggled whenever I said peek-a-boo; when she finished the whole bottle without spilling any; when I witnessed her achieve every small step. Then, when she drew me beautiful pictures, made me pretty cards and crafts, and when she entered university with top scholarship.

All in all, I cannot ask for a better daughter; I am so proud of her, and thank you Joyce for making a better me and a proud mom!

 

From Joyce (Daughter):

Joyce

A newborn baby pierces the room with a cry for air, and with her eyes open and fingers outstretched, she is ready to explore the world. That was the delivery my mother should have had, but when I arrived three months early, the surgical room was silent. Before even seeing her baby, the doctors whisked me away. They later revealed that inside a body that was smaller than a tissue box and weighed about two oranges, my lungs, eyes, and immune system were very underdeveloped.

Improvements in my health over the next weeks at the NICU can in part be attributed to the fantastic health care team who had so much knowledge and dedication. Their ability to console worried parents, and to openly communicate about their child’s health, makes them a source of stability and honesty during unpredictable times. Despite the excellence of the health care team, I would not be leading a healthy life today were it not for my parents.

My birth was risky, but my parents were the true risk takers.

Often the odds seemed stacked against my survival, but my parents still committed all of their love. Questions of whether they would be able to see me grow stronger, reach my first birthday, or my high school graduation crossed their minds every day. What kind of music, sports, and ice cream will our daughter like? Typical questions that other parents would certainly find answers to in time. Yet, for parents of premature babies, there is a fear of not having enough time with the child.

I admire that when facing this uncertainty, my parents acted with courage and hope, holding on to that silver lining. And even though they initially did not know how to care for a baby so small and with specific health needs, they took every opportunity to be involved and to learn.

After the stressful months at the NICU, I was finally permitted to go home – but it was not smooth sailing yet! Every night my parents’ sleeping was interrupted with the crying of a baby who did not want to rest (or cooperate during meal times, baths, or trips in the stroller for that matter). During elementary school, guess who had to help out on projects about pioneers, prairie dogs, model cars, and Costa Rica? Dad and Mom.

Fast forward to this September, and I will be entering my fourth year of undergraduate study in the Arts and Science Program at McMaster University. Now it seems that I am the one asking a lot of questions: in which direction is my career, and how am I to tackle this thesis? Despite living more than an hour’s drive away from home, they visit me on weekends, bring me delicious food, and are quick to offer sage advice.

This story began on a slippery slope, but I am grateful for where we are today. The small scars on my arms and heels from the needles I had relied on almost 21 years ago in the NICU still remind me that life is a gift. Above all, the scars remind me of the support, strength and unconditional love of my parents since day one.

 

Michelle Ryan, MD

I started medical school three months pregnant with my second child. Within two months, at 24 weeks and 5 days’ gestation, my membranes ruptured and I went into labour. A decision had to be made quickly about whether to proceed with a classical Caesarean section, potentially compromising my future ability to carry to term, and be aggressive with the medical care in an attempt to save our infant who, we were told, only had a 30% chance of survival. My husband and I reasoned we had this baby now, so we asked that aggressive measures be taken. Within the hour, our little Josiah was born – all 750 g of him.

By day 2, he was experiencing seizures, required blood trans- fusions, and his head ultrasound revealed Grade 3 and 4 hemor- rhages. We were advised to take him off the ventilator. Our questions of what his future would hold were met with unclear answers. Without a clear understanding of his future quality of life, we prayed God would heal and help him, hoped for the best and decided to let Josiah continue to fight.

The next five weeks were a roller coaster of emotions that car- ried us through countless blood, platelet and plasma transfusions, a laparotomy and a bowel resection. Emotionally, mentally and physically, the stress is draining for parents who are constantly on edge, wondering if the phone ringing will bring more bad news.

A few days following his surgery, we were again asked to extubate him. He appeared to be recovering well, but the subsequent head ultrasound appeared worse. This can be extremely confusing for parents. Our child evidently was a fighter, the physicians willingly performed the surgery, but then they ask you to let him die.

As someone in medicine, I had some comprehension of his medical status. I was shown the ultrasound images, given the daily bloodwork results and believed I was part of his management team. I understood their rationale for asking us to extubate because his future quality of life would be poor. What the physicians failed to understand is that they were trying to appeal to my rational side, but for those five weeks I was Josiah’s mother, still hoping to bring him home one day. To wear both hats at the same time is impos- sible. We decided to fight alongside him.

Over that next few days, he quickly deteriorated. We were told, “He’s dying. There is nothing more we can do.” We knew our son well by then and saw he was tired. The deliberation between my husband and I was short and we elected to take him off the ventilator. We were a family now – father, mother and dying child. No incubators, masks, or lines separated us any longer. I held his tiny frame, which should still be in utero, against me. Within 45 min, our beautiful son died peacefully in my arms, in warmth and surrounded by love.

His death overturned our lives. There was a void of unmet love and unfulfilled moments that trailed us like a shadow. Five years later, we continue to miss him, but much of our healing came from knowing we fought along with him, and in the end, respected his wishes; we also spent our last moments together, instead of watch- ing him go lifeless through an unfeeling plastic incubator. Our decision to not extubate him earlier was irrational to others, but I live without regret. Because I had some medical knowledge and was the only consistent person by his side since his birth, I believed I was able to better advocate for him, and that my voice and opin- ions were ultimately respected.
From this ordeal, I have gained the following insights:

  • Communicate with parents on a daily basis, even by phone, so the parents truly understand and stay abreast of the developments and gravity of their child’s conditions. If possible, have the information relayed by the same person so a trusting alliance can be formed.
  • When approaching a parent about palliation or a do-not- resuscitate order, do it in a comfortable, nonthreatening environment, with only a few key people, including the child’s primary nurse, if available. For us, there were four residents and physicians with my husband and I in an interview room. There is a need for privacy, but I felt unprepared for so many people arguing their point of view for palliation and became defensive. To me, it gave the impression we were no longer a cohesive team.
  • When relaying why you feel a do-not-resuscitate order/end-of- life procedure should be enacted, use clear, basic language to allow parents to make a fully informed decision. If you know the child will have a short lifespan, tell them you would rather their child die with love rather than having their chest compressed. Parents will latch on to even a small, unrealistic hope, if one is inadvertently offered.
  • Let the parents know you are also there to advocate for their child, just as they are. Together, you are a team. Give your opinion. Making the parents feel as if they have to make this decision on their own will only push them to resist the idea of palliation for fear it is the wrong choice.
  • If the parents do decide to remove the life support, allow them time to be alone with their child. Ask all relatives to leave for even a short period of time to allow the parents to grieve in private. Parents often do not have the strength to do this by themselves. As the physician, come in and ask to hold their child. By cradling their child, as they had, demonstrates they were someone you valued and cared for as well. If you feel like crying, shed a tear with the parents. The positive impact this has on the parents is tremendous and will help them heal. If time permits and the parents ask, attend the funeral.
  • If the parents reject palliation, respect their decision, but encourage them to spend as much time as possible with their child, so they will know when their child is deteriorating. If that time comes, ask them to respect their child’s wishes. This is often not something that needs to be done immediately, but it is important to start the dialogue. Unless the parents come ready to start palliation, ask them to go home to discuss it together and then come back with questions.

Above all, remember this is a decision the parents have to always live with. Having to bury your child tortures your soul. If the parents feel pressured into the decision, even if unintention- ally, it will have a lifelong negative impact from which they may never fully recover.

Acknowledgements: I thank Dr Hilary Whyte and Ms Lori Ives-Baine for their invaluable input and support as well as my spouse, Dale Lynch, for fighting along with me.

Personal PersPective
Personal reflections on end-of-life care in a newborn infant
Michelle Ryan MD PGY1
University of Toronto, Toronto, Ontario
Correspondence: Dr Michelle Ryan, Alberta Children’s Hospital, Pediatric Medical Education Program, 2888 Shaganappi Trail Northwest, Calgary,
Alberta T3B 6A8. Telephone 647-881-0388, e-mail michelle.ryan3@albertahealthservices Accepted for publication January 26, 2012

The Martens Family

Ok, so here is Jacobs’ story … There are many views, there’s my emotional new mom view, there’s our view of the time as a family and then there is the view on the medical implications that resulted in our extended stay…. I am already lost and anxious to begin writing, as re-living any part of this time in our lives, is like willingly re-living your worst nightmare. This period of time does not define our son, myself nor our relationships, it’s the worst of the worst for us.

In between there are these magical moments, incredible friends and health care providers and of course at the center is Jacob, our little miracle, the medical exception to every rule, the tiniest scrap of humanity that ever LIVED!

Jacob Evan Martens was born via emergency C section at the Royal Alexandra Hospital in Edmonton, Alberta at 8:35pm weighing in at 710 grams and arriving on the 5th day of his 24th week of gestation. He needed to be resuscitated after letting out a little holler at the nurses and doctors in the room neither myself, (I was unconscious) nor his father were present at his birth.

His Apgar scores were 3, 5, and 7. The talented hands of a transport nurse named Liz and an Respiratory Therapist named Darren and an Neonatal fellow, Amber performed CPR on him while they struggled to intubate his tiny body. They were successful after 45 min and his father was allowed to see him and touch his hand. Jim named him Jacob Evan after his forefathers and his late aunt.

In his first 12 days of life Jacob fought through: pulmonary hypertension, a pulmonary hemorrhage, high blood sugar, PDA complications, and intra-ventricular hemorrhage resulting in hydrocephalus, a bowel perforation, he required several different medications, several blood products, re- intubation, gut surgery, brain surgery and a transport to a different hospital to receive said surgeries. In the midst of that first week the things that stand out to me his Mama are: I loved to hold his little hand! His blood pressure issues were only ever present when I was out of his room, breast pumps are evil things designed to make the most dedicated mothers feel inadequate! And what joy I felt when he self-extubated and we were allowed to try sin-to-skin care. I held him on day 5,6,8 and 10 then Jim held him on day 7 and 9, then things went wrong. We didn’t hold Jacob again till he was over a month old.

In the following months after the first two weeks we struggled to effectively advocate for Jacob as we had little information to base our choices on. We only had the love in our hearts and the doom and gloom from the majority of the doctors. (only one nurse was hopeful for him … like us) after 4 end of care talks in 6 weeks Jim and I placed a DNR (do not resuscitate) on our son. IF his heart stopped, we didn’t want to attempt to bring him back, what a horrible feeling that was; it felt like we gave up on him. Once Jacob reached the weight requirement for brain surgery, to place a shunt, we lifted the DNR and, told the unit to stop sending the Palliative care team to our bedside and started stretching our legs as pro-active, informed and fierce parents! We requested and were successful in setting up a family-centered care team within the NICU’s and had a primary physician that we worked with. From here on out we did better as a family there was a turning point that we didn’t see ourselves take until we looked back on that summer, it was in late August when we took what we were given and cherished it instead of being overwhelmed and numb and scared. So what if he can’t hear, see, move swallow, whatever! We felt like a family. We were showing it to the whole world and smiling despite the treacherous road ahead, bring it on!! We are together, we love each other and Jacob can feel that and we will take that and run with it!!

Throughout the fall months Jacob’s struggle was intense. We made through several brain surgeries and a g-tube insertion that finally worked to protect him from further aspiration which was a huge problem. We found a pediatrician and at 5 months and 3.5 weeks we transferred out of the NICU into a Pediatric Intermediate Care Environment. I cannot tell you that was the end of our hospital stay, Jake was 11.5 months old before we brought him home for the first time.

To date Jacob has endured 22.5 months of hospital life, over 30 invasive surgeries, 18 of which were in his brain, and dozens of other procedures all with a smile and infectious giggle that he’s imprinted on almost every healthcare professional he has met. He is 4 years old and has 24 different diagnosis, several of which are life threatening.

He is what some call terminally ill, I think he is just terminally cute!

 

 

 

 

The Mostowy Family

Eli was born at 25 weeks weighing 1 lb 7 oz. I was devastated, as I’ve never heard a baby born this young and survive. During his NICU stay, we were constantly told he may not survive. His doctor never gave us any positive report for the first few months. We were always wondering if he will be able to fight all this. He was septic, he had pneumonia twice, a nurse accidentaly cut his finger, he developed ROP, unexplained high blood pressure, and he lost his voice due to being intubated for almost 3 months. He came home on oxygen and he just came off it a few days ago.

I truly believe he is a miracle baby and all moms out there who are experiencing the same thing need to know there is hope. It helped that the NICU at Children’s Hospital of Winnipeg were really good. They taught me everything I need to know to care for Eli. I thank all of them for caring for Eli.

The Reeve Family

A Mother’s Miracle

My pregnancy started like anyone else’s. The worst feeling I had was like a constant hangover. It was nothing compared to some women have to go through. I thought I was getting off lucky. In a few months I had started to feel the baby move, “This is real, my baby is moving!” Little did I know this was BOTH my babies moving. I was having twins! I was shocked, they were so rare in my family, how could I have TWINS!! Could I handle it? Was I ready? Why was I having twins??? I would find out the answer to these questions soon enough.

Eight Short weeks later in my 27th week of pregnancy (6 months), on March 19th, I went in for my regular ultrasound. The doctor expressed to me her concerns about the weight of the babies. They were quite small and she was sending me to the Royal Alexandra Hospital in Edmonton to undergo testing and observation. I was to leave that night after work. I left everything on my desk, including my coffee cup and mittens, telling fellow staff that I would probably be back in a few days. Today was the day that God had started to work his miracle for 3 lives.

After picking up my mom and my sister, we drove to the city and arrived at the hospital around 8:30 pm. In the car my mother had a talk with me about the worst possibilities. “It’s just observation”, I thought. I shrugged off what I considered Mother’s Excess Worry. I was admitted with my mom and sister by my side supporting me the whole time. The snow outside forced my mom and sister to eventually leave me on my own.

On Saturday I had another ultrasound and that is when the doctor told me he thought the twins weighed about 800 grams each, they were very small. He also discovered that the reason they were so small is that I was unable to feed them properly while in womb. The plan was to keep me pregnant for as long as possible to give the babies the best chance of growing and surviving. I was taken on a tour of the NICU. I gowned up an saw some of the smallest babies I had ever seen one was 830 grams. It was so small and delicate, yet it somewhat peaceful. I could hear the beeps of the heart monitors and I could see the mountainous patterns of breathing and heart beats. There was constant movement of nurses, always checking, adjusting, watching… Caring. After my tour I was brought back down to the Ante-partum wing and into my bed. . Later that afternoon I was given a steroid shot to help develop the babies’ lungs. It takes one shot a day for two days and then 48 hours to take effect, that would be Tuesday. Once again I was part of God’s Miracle for these Twins. Although the doctors and nurses were trying to prepare me for when I had the twins, nothing could prepare me for what later happened.

Sunday was uneventful I stayed in my room and visited with my mom, sister, and nieces and nephews. That night my mother returned to her home – 4 hours away, and told me not to have the babies while her and my dad were on their trip to BC for 3 weeks, they were to leave on Thursday. Being a good daughter, I promised.

Tuesday, March 23, 2004 would be a day I would never forget, if I could remember it all. What I can remember, what I was told and what I read in my medical file would change my life forever.

I woke up feeling quite fine. I ate breakfast and lay down to watch TV. “Bed rest sucks!” I thought. 9:00 came and I was starting to feel back pain. It got worse and worse until at 10:30 I called a nurse, I needed something for this! My whole body was screaming! Doctors came in, checked me out as best they could, I couldn’t stay in one position, it all hurt so bad!! They put me in a wheelchair and they were going to do tests. On the way out of the wing, I demanded someone phone my sister, I knew something wasn’t right.

The last part of constant memory I have was looking at the clock – It was 11:05. I had already endured 2 hours of the worst pain I had ever felt in my life! I remember being in yet another ultrasound room, already on the bed. The nurse tried to get me to lay down but every time I tried, I threw up. Deciding this wasn’t an option, the doctors put me back in the wheelchair. After what I thought was an eternity, I was still sitting in the hallway. The pain was excruciating. It’s 2:00, I remember thinking, “When am I going to pass out, I thought you were supposed to pass out after so much pain?!!” Not a second later I heard the doctor yell (I think), “Get her upstairs now!!”

Like magic I appeared in the operating room. I was already in a gown, and the doctor sat me up. They gave me a spinal shot for pain, and I remember them asking if I felt anything. Nope, nothing, completely numb. In a flash I was shown my daughter, Jordanna. I smiled. Dylan, however was rushed to the NICU and it would be 2 days before I would see him for the first time.

At 6:00 (my sister says it was 11:00) I was in a recovery room. A nurse was trying to tell me what has happened. I looked to my right and I saw my sister. After demanding profusely to find out what was going on with me and my babies, they let her in with me. I heard her telling the nurse, “Tell me, she has no idea what your saying, talk to me!.” It was true, I remember nothing of what the nurse had said to me or anything else that night.

Thursday, two days after all of this, I am finally awake for more than 20 minutes at a time and can finally go up to the NICU to see my babies. My mom and dad took me upstairs to the twins. They were in a level 3 NICU, for really sick babies, in an incubator, but not intubated. They weighed 690 and 720 grams, which is just 1.5 lbs.

Their skin was so translucent I could see their veins, and their hands and feet were the size of my thumb nail. Their arms were comparable to my whole pinky finger. Head to toe they went from the tips of my fingers to 2 inches past my wrist, curled up they fit in my hand. But they were alive, and the hospital was abuzz about the miracle twins, so small and no intubation, and ALIVE!

So what happened? In 5.5 hours, it turns out I had pre-eclampsia, toxemia and HELLP (Hemolyis, Elevated Liver enzymes Low Platelet count) Syndrome, basically, over a few days your body will slowly shut down and deteriorate. Kind of like it poisons itself. My case happened so fast that my organs just stopped. Luckily for me there was no deterioration. HELLP has up to a 60% mortality rate for both the mother and child and only happens in .2 -.5% (one half of a percent) of all pregnant women; so everyone was extremely lucky. Even if the doctors had waited another half hour we all would have died. It was the worst case of HELLP the city of Edmonton has had in 16 years and one doctor told me I had “the most impressive display of pain he has seen in his career.” I should have died. Another miracle.

One week later, I was finally able to actually hold my babies. Blessed that they overcame the 3% survival rate that they were given, blessed that their heart and lungs were good, blessed they were alive and mine! A 3% survival rate… Another Miracle!

Two weeks after I held Dylan for the first time, I had to stop. The nurses phoned me in my boarding room and told me Dylan’s d-sats (oxygen level in the blood) were in the mid to high 20’s, they should be in the high 90’s. I ran up to the NICU as fast as the elevators could take me. The nurses explained to me that Dylan was no longer breathing on his own and had to be intubated, they were monitoring him extremely close and at one time even advised me they had a Chaplin on call if I needed him. My God.. my son is dying! That was the only thing I could think of. He had RSV, respiratory syncytial virus. That is a lung infection that can be fatal to premature babies. The next week I spent between my daughter Jordanna in the NICU and the Isolation room with my son Dylan. I could only gently place my hand on him with gloves on. I was not able to hold or comfort my child in his deepest time of need. Being that premature, his NICU team had concerns he wasn’t going to make it. But like me, my son is a fighter and eventually managed to pull through.

In the meantime, I felt everything, helpless, alone, tired, and weak. After 3 weeks of doing this on my own, I couldn’t any longer. My mother came and stayed with me for 4 days. She got me out of the hospital for walks, shopping and dinner. She let me cry on her shoulder, and lay in her arms. While I was constantly devoted for caring for my twins, she was devoted to caring for me. She reminded me that I had strength and that the three of us would make it out of there. Then Dylan got better.

After three months in hospitals, at 4.5 lbs each, we were allowed to go home – on their due date! Years later, my children are still small and slight but are otherwise developmentally on track with other children their age.

My 2 children – my only 2 children, came out of the only time I would be pregnant. Being pregnant again would mean immediate hospitalization, and I would be lucky to carry to 25 weeks. I have a 25% chance of having HELLP again, and I may not get as lucky as did last time. That is okay, because I have my two miracles right now. If I hadn’t had my ultrasound that day I wouldn’t have gone the RAH and I would not have received the steroid shot. I would have been at work on Tuesday and by the time I knew to go to the hospital, sign in, have the doctors do tests, call STARS, and fly me to Edmonton, we would have died.

So are my kid’s miracles? Yes, They are True Miracles, when I am at my wits end, I remember how close I came to not having them, and I try to not take advantage of being a parent. I make sure to give them tones of hugs and kisses, and each birthday is truly a celebration of life!

I thank my mom and sister for being the amazing support system they were for me. And I thank God for giving me strength to go on and my babies the strength to live. I thank God for Miracles!

Miracles

Miracles

Miracles

The Stolar Family

Asher & Talya’s NICU Journey

Twins, Asher and Talya came into this world 15 weeks early; they were only 25 week’s gestation; only 1 week into their third trimester. While we were scared, shocked, overwhelmed, we did have some warning signs that they would be delivered early – we just never thought that it would be this early! At 14 week gestation, I experienced Preterm Premature Rupture of the Membranes (PPROM) with Asher (twin B).

It was at this time I became a high risk patient and was followed more closely. I was put on modified bed-rest in the hopes I would make it to 24 weeks (viability) at which time steroid injections could be administered to assist in the development the lungs. Unfortunately, only a week later after receiving the steroids, I went into labour.

 Stolar Family

Stolar Family

 

 

 

 

 

 Stolar FamilyAfter arriving at the hospital, I was put on total bed-rest with the hopes of stalling labour. This was not to be; Asher and Talya were born August 13, 2005, by emergency c-section and welcomed into their new home – the NICU- where they stayed for the next 130 days. Talya weighed in at 1 lb 13 oz and Asher 1 lb 10 oz. While both were extremely low birthweight and each had their issues and complications it was Asher who struggled the most…the first 24 hours were crucial as to whether he would survive. My older son was able to see them even before me and referred to them as a couple of “hot peppers” as they were so small and shrivelled!

 Stolar Family
Discharge Day!

When I was well enough to venture over to the NICU and see Asher and Talya for the first time (on their 2nd day in the NICU), I was shocked and breathless. Nothing can prepare you for that first time you see your child (ren) hooked up to machines with so many wires & tubes and beeps & buzzers going off. To see them so small, so fragile and yet… so perfect! After what seemed like an eternity (but was only 8 days) I finally got to hold each of them. It was bittersweet; to feel each of them so close but not be able to look into their eyes for they were still fused shut, to have to sit there while one was resuscitated as the ordeal of coming out of the isolette was just too much. I will never forget.

As predicted, the next months felt like a rollercoaster ride with many one-step forward and two-steps back. There were ventilators and oscillators, Pulmonary Interstitial Emphysema (PIE), heart murmurs, and PDA ligations. Talya suffered a paralyzed vocal cord, both had chronic lung disease, Asher fought through sepsis and stage 1 NEC, central lines, hernia surgery and the list goes on.

It was definitely all of the “little things” that the NICU staff did during their stay that meant the most. Celebrating them and their milestones – like when they made the kilo club or when I arrived on Halloween to find them dressed up in doll costumes AND in the same isolette; this was the first time they had been reunited since the day they were born 3 months earlier.

Stolar Family
Growing Up Happy and Healthy

Finally, on December 20th, 2005, (27 days after their original due date) Asher and Talya came home with Mom, Dad and Big Brother Ethan. This would never have been possible without the dedication, persistence and compassion of the hospital staff. We often recall what the neonatologist told us on discharge day…he said he had good news and bad news and which would we like to hear first. We asked for the good news where he replied that Asher was “strong, independent and a fighter” It was now time for the bad news; Asher is “strong, independent and a fighter”…and he wished us good luck!

There were lots of appointments to attend to after they were discharged and several years of follow-up clinics but to have them home with us finally was nothing short of miraculous. We are very fortunate for any lasting effects of their prematurity are quite minimal; Talya only has one working vocal cord, but she can still belt out a tune…or scream at her brothers. Asher struggles with his eyesight minimally – he wears glasses and patches (sometimes) due to strabismus.

Fast forward to today, October 2012. Asher and Talya are the most amazing 7 year olds. Talya loves to colour and horseback ride; Asher loves Lego and skateboarding. We are so blessed to have them in our lives – they truly are our little miracles.

The Story of Amie, Ben and Cory

1 + 1 = 3??

We lost our first child at 23 weeks, but we were determined to try and have a biological child.

We became pregnant after 3 years of progressively aggressive fertility treatments. The 6-week U/S showed twins, the 9-week U/S showed triplets… how did that happen!?!?

The Pregnancy

The pregnancy was difficult. I was taken off work at 13 weeks due to cramping and bleeding. Insomnia and nausea added to an already stressful time. We prepared ourselves for another potential loss.

Every week gave us hope.

January 25, 2013 – 27 weeks into pregnancy

3:30 am I awoke to light bleeding
6:00 Brian (husband) took me to London Health Sciences Centre (LHSC)
8:00 Sent home – cervix closed, bleeding stopped
11:30 Water broke, contractions started
12:30 pm Went back to the hospital
1:30 2cm dilated, moved to a birthing room. Steroids given.
3:30 No change, epidural ordered and done.
4:30 No change, Brian went for coffee.
5:00 Contractions progressing. Triplet A heart rate started dropping. Checked and now 8cm and a foot!! Paged Brian to get to Operating Room.
5:23 Triplet A born vaginally. Continued to monitor Triplet B + C, membranes still intact. Heart rates started to drop, decision was made to deliver by c-section
6:06 Triplet B was born
6:08 Triplet C was born
10:00 Met my babies for the first time…

 

abc1 Amelia Marie

Amelia Marie – “Amie”

  • Triplet A
  • 1010 g
  • 34 cm

abc2

Bennett Donovan – “Ben”

  • Triplet B
  • 1020 g
  • 36.5 cm
abc3

Cornelius Brian – “Cory”

  • Triplet C
  • 1150 g
  • 39 cm

 

One Step Forward, Two Steps Back

4 surgeries

– 3 bowel, 1 hernia

6 septic events

– 3 NEC, 1 pneumonia, 2 unknown

1 cholestasis event

1 leg blood clot

1 cardiac arrest

1 PICC line

12 blood product transfusions

PDA, ROP and PVL

Many long lines and IV starts, x-rays, ultrasounds, bloodwork…

…and apparently our stay was fairly uneventful

1 + 1 = 3

Happy Homecomings…

Cory – came home April 23, 2013 – 89 days in NICU

Amie – came home April 29, 2013 – 95 days in NICU

Ben – came home June 19, 2013 – 133 days in NICU

– 11 days on Paeds

 

 

Follow-up Continued… (and still continues)

Oxygen therapy

Heparin therapy

PICC line care and bloodwork

Physiotherapy

Head molding helmets

1 + 1 = 3

 

 

 

 

 

 

 

 

 

Look at us now!

We are 10 months old (as of November 2013) and doing well!!

1 + 1 = 3

 

 

 

 

 

1 + 1 = 3

 

 

 

 

 

 

 

If it takes a village to raise a child… it must take a city to raise triplets!!

These special people have helped make our dreams come true…

Dr. Stephen Power & the Fertility Ontario team

Dr. Barbra deVrijer & the Fetal Medicine team

Dr. Shannon Arntfield & the Obstetrical team

Dr. David Lee & the NICU team at London Health Sciences Center

Our primary nurses – Cheryl, Melanie & Kathy

Our social worker – Dolores

Dr. Sharon Jones & the Pediatric Surgical team

The Ronald McDonald House

The Story of Leo

leo-pic1-300x225While on vacation in Savannah, Georgia, Leo was born nearly 8 weeks early at 32 weeks and 5 days on October 26, 2012 at 2:29 A.M. He weighed 3lbs. and 8oz and measured 15.7 inches. Despite being born early, Leo was in good condition.

A few days after birth he needed to receive treatment for jaundice which required two rounds of phototherapy over a week’s time where we could only hold him for an hour a day.

In addition to this, Leo needed time to develop in order to regulate his own body temperature and learn to coordinate his ability to breathe, suck, and swallow.

Leo was air transported from Savannah’s Memorial Hospital to St. Paul’s, Vancouver, at 18 days old, where he stayed another 15 days.

By the end of his NICU stay, Leo went home as a breastfed baby after 33 days.

Several months into Leo’s stay at home, low weight and low milk supply for me was a concern. We looked to many lactation consultants for support, as well as local La Leche Leagues.

LeoHowever, once he began eating solids at 6.5 months (adjusted to his due date) those concerns became part of his past. Leo may still be towards the bottom end of the WHO weight chart for his age, but he continues to be a breastfed baby who loves to eat solids and we are more than happy with his development. He is no longer that sleepy baby we worked hard to wake to eat, but he is rather the opposite. These days he’s out and about in the community, learning baby sign language, and fighting sleep everyday. He is a strong crawler, loves to stand, open and close doors, and get into anything he can get his hands on!

This past October, Leo had his first birthday and celebrated with friends and family in both Los Angeles and Seattle.

The Story of M & R

By their mother, Alana Romain

The day my twins, M and R, were born was easily the best day of my life, but it was also the worst. I’d been pregnant for 25 weeks and 5 days, and along the way I’d watched as things went from bad, to worse, to this is a nightmare.

We discovered at a routine ultrasound at 21 weeks, that I had what was called a dynamic cervix, or a cervix with a fluctuating length. What I learned that day was that I would almost certainly not carry my twins to term, but I might at least have a shot at carrying to viability.

I was admitted to hospital three weeks later with threatened pre-term labour, and managed to stay pregnant for another week and one day.

Once labour had begun, we had a visit from the neonatologist, who asked whether we wanted the babies to be resuscitated after they were born. “Do everything,” we said. “Please do everything.”

We spent 124 days in the NICU following M and R’s birth, trying to learn how to be parents under the most unnatural of circumstances: learning a new language of medical terms, watching our children struggle with complications, studying the statistics and grilling doctors and nurses for any and all tips about outcomes, kissing our children each night and leaving them behind as we returned home, only to do it all again the next day. We worried about our son, who had a PDA that eventually resolved. We worried about our daughter, who had a grade III intraventricular haemorrhage that didn’t. She developed hydrocephalus, and made it through two shunt surgeries before she even reached term. We worried about the future. We worried we would never leave the NICU. And then, Madeleine and Reid finally came home.

Alana-Preemie-PhotoWe are now approaching the twins’ first birthday, the first anniversary of their entry into this world (even if technically they’ll still only be nine months corrected), and the story of their birth and NICU stay has never left us and probably never will. At the same time, and as I’ve heard time and time again from other preemie moms, those days are behind us, existing now as one big, foggy blur that comes back in flashes and bits and pieces, almost completely unbelievable except for the fact that we know that we lived it. M and R’s prematurity is still a presence in our lives – it’s there at follow-up appointments, it’s there when we worry about shunt malfunction or signs of cerebral palsy, or even when we slather on the hand sanitizer for the millionth time to try and prevent the babies from catching a virus.

But what I’ve learned, almost one year on, is that while your preemie story never leaves you, while you will always carry with you the heartache and loss and sadness and endless what-ifs, once you get home, once you get to watch your amazing preemie warriors growing and laughing and throwing their yogurt across the room and feeding their rice rusks to the dog, you’ll begin to realize that the moments of joy and gratitude over your children – your children who could have died but didn’t – will start to balance out the pain, little by little.

While the stories of preemie families are all unique, we share so many commonalities. No matter how easy or hard a course we had in the NICU, no matter how long we were there, these stories have become part of who we are as mothers, and they deserve to be honoured. They are, after all, the stories that made us parents.