PREEMIE UPDATE: Zachary Nicholas Jackson

In our May edition of our Preemie Family newsletter we learned about the incredible Zachary, a preemie born at 28 weeks, 1 day who was 1 lbs. 15 oz. at birth and spent 155 days in the NICU.

Read more in an update by his mother, Yamile. . . 

by Yamile Jackson, Zachary’s Mother:

PREEMIE UPDATE: Maddox Alan Rawn

In our April edition of our Preemie Family newsletter we learned about the superstar Maddox Alan Rawn, a preemie born at 24 weeks, 1 day who was 1 lbs. 12 oz. at birth and spent 153 days in the NICU.

Read more in an update by his mother, Amanda. . . 

by Amanda, Maddox’s Mother:

The quick onset of a placental abruption sent me into a whirlwind of fear. Doctor’s telling me I would deliver my son at just 24 weeks and 1 day gestation, had my head spinning and gave me more questions than I had answers. I had a normal pregnancy up until that point and my OBGYN always said my ultrasounds looked great. My son, Maddox, spent 153 days (5 months) in the NICU. What his little body endured in the NICU blew my mind. He was 1 pound 12 ounces and 12 1/2 inches long at birth.

When he had his first surgery for a bowel perforation (NEC), he weighed only 1 pound 8 ounces. Dr. Jones, his surgeon, told us her number one goal was to bring him out of surgery alive. I was terrified of losing my son. Shortly after they took him in, we received a phone call from a neonatologist to meet in the parent “quiet room.” It was there he told us that Maddox wasn’t doing well. Doctor’s and nurses kept saying things like, “it doesn’t look good,” “he’s having a hard time.” I wanted to scream. My husband and I were down on our knees. We were crying and praying for a miracle. After what seemed like hours, they came in and said he was out of surgery and alive, but he wasn’t out of the clear yet. Dr. Jones came in and informed us that while she was operating, his liver started to bleed out (subcapsular hematoma of the liver) on the operating table. She explained how she barely had time to sew him back up and it was minute by minute. I can’t even begin to explain the panic, terror and helplessness we felt. Slowly, Maddox started improving and things got better. He survived. We were later told by a NICU nurse of 15+ years that she had only seen 5 babies survive a subcapsular hematoma of the liver.

Following that horrible scare, Maddox faced 2 blood infections (yeast), another bowel perforation, Intraventricular Hemorrhage (IVH), Hydrocephalus (with a Ventriculoperitoneal or also known as a VP shunt), Periventricular Leukomalacia (PVL) and 8 more surgeries while in the NICU. In just one week, he had 3 surgeries! The second time he developed yeast in his blood (from the second bowel perforation), we were asked if we wanted to sign a DNR. His organs were shutting down. Once again, we prayed for another miracle. It amazes me what such a little baby can endure and still survive. Nine surgeries, multiple infections including yeast in the blood twice, meningitis, MRSA, subcapsular hematoma of the liver, frequent intubations and much more. Some of the things we didn’t struggle with while Maddox was in the NICU were his heart (his PDA closed on it’s own when he was a couple days old), his eyes (he developed Retinopathy of prematurity or ROP stage 2, but it had cleared upon discharge) and although he did have some issues, amazingly, his lungs.

He was discharged bottle feeding and without oxygen which is surprising to many of his doctors. His transition home was bumpy, but we eventually got into a routine. Dealing with GERD (acid reflux) and keeping an eye on his VP shunt had us constantly worried. We also found out he developed Gallstones from the chronic TPN. Since he is asymptomatic, Dr. Jones decided to monitor him and wait until it’s absolutely necessary to take his Gallbladder out.

I think it’s a common misconception that once your child is discharged from the NICU that they are like a typically developing term baby. That couldn’t be farther from the truth! Maddox has faced many challenges since being home. Like most babies similar to him, he is delayed with his development.

Maddox had a 10th surgery after being home for 6 months for a fluid pseudo cyst in his abdomen. Besides being in the hospital a month and a half past his due date, the last surgery also set him back. That all said, he is making progress everyday. We found out at his 3 month ophthalmology follow up that he has low vision. He was diagnosed with Cortical Visual Impairment (CVI), ROP and Nystagmus. This was a shock to us since all his eye exams in the NICU were “good.” Having a child that has low vision proves to be a challenge, since most milestones are visually driven. Maddox continues to improve and is even reaching for objects now. His early interventionist and physical therapist (who see him on a weekly basis) are both amazed at Maddox’s resilience, progress and determination. He continues to amaze us and those working with him.

Having a micro preemie has forever changed me. For one, my husband and I have become complete and utter germaphobes. I have learned more medical terminology, diagnoses and procedures then I care to count. One of the biggest adjustments my husband and I have gone through is the isolation we are now forced into. This winter was Maddox’s first winter home and we were advised to be on “lock down.” This includes me staying home with him and only taking him out for necessary doctor’s appointments. We also limit visitors and don’t allow anyone over who is sick or hasn’t had a flu shot. This has drastically changed the way we live, not to mention change our relationships with family and friends.

I have learned so much from this journey. First, that we aren’t as in control as we think. I had everything planned out about my pregnancy, birth plan, work, etc. That all went down the drain when I had Maddox. He became my focus. I have witnessed so many miracles through him. Maddox’s neonatologist once told me he couldn’t explain why Maddox had cleared an infection that was shutting down his organs. I will never forget that. I have learned to be patient, rely on God and that I have strength I never thought I had. There are many lessons I have learned, too many to count. The greatest lesson is that there are no guarantees, so enjoy every moment. We celebrate Maddox all the time. Milestones that others take for granted, we celebrate. We know when Maddox does something, he has overcome a mountain. We don’t take life or our son for granted. He is a true gift. A real miracle.

Photo Credits:
Professional Portrait of Family: Jasen Master of J. Master Photography
The rest of the photos: The Rawn Family

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PREEMIE UPDATE: Henry Joseph Anicker

In our March edition of our Preemie Family newsletter we learned about the incredible Henry Joseph Anicker, a preemie born at 25-weeks, 2 days who was 1 lbs. 3.65 oz. at birth and spent 109 days in the NICU.

Read more in an update by his mother, Kate. . . 

by Kate, Henry’s Mother:

Henry’s birth was a surprise at 25 weeks 2 days. I had never felt him move inside me. I did not realize that babies could survive before reaching the third trimester. He weighed a mere 1 lb. 3.65 ozs at birth and spent 109 days in the NICU. According to the NICHD Neonatal Calculator on Extremely Preterm Birth Outcomes, he had a 14 percent chance of “survival without moderate to severe neurodevelopmental impairment.” Henry ended up being one of the lucky 14 percent. He turns 6 years old at the end of April. He is happy, loquacious, intelligent, creative, and affectionate. He started kindergarten in the fall and is doing very well in an accelerated kindergarten program. His success is a result of the love he received from our family, the care that he received in the NICU, the therapy that he received from our state’s early intervention program, his own fortitude, and luck.

 

The Early Birth

Had my doctor and his staff been competent, my blood pressure issues would have been caught much earlier and I could have been put on bed rest and/or given magnesium in time to give my son a couple more weeks in the womb. Unfortunately, I had a doctor whose assistant did not know what she was doing, and I believed her when she said at every appointment that my blood pressure was 120/80. A week before Henry’s unexpected birth, I had to beg to get an appointment with the doctor even though my vision was failing and swelling had set in. At that appointment when I explained my concerns, the doctor told me that as a first-time pregnant woman, I just didn’t understand how it felt to be pregnant. The morning of Henry’s birth, my husband and I realized that the doctor’s assistant wasn’t even watching the blood pressure gauge as she “took” my blood pressure. The doctor walked in and said, “There is no problem. Your blood pressure is fine.” My husband told him that the assistant wasn’t taking the blood pressure correctly. At that point, the doctor opened up my file and looked at the urine results. He took my blood pressure himself and then calmly recommended that we get over to hospital triage unit across the street. By that point, my kidneys had begun spilling protein. I spent several hours in triage and was then flown via helicopter to a hospital with a Level III nursery. My blood pressure hit 190/150. The hope was that I’d be able to spend bed rest time in the hospital, but it was too late. I had only been at the hospital a short while when it became clear that Henry was in distress. His heart rate had dipped a couple times. I ended up having an emergency c-section.

 

The NICU Stay

Henry’s NICU stay was filled with many ups and downs. Like many preemies, he was put under bili lights and needed blood transfusions. He needed steroids for his lungs. He had edema and kidney problems for a while and was put on diuretics for two months. When he was two and a half weeks old, he mysteriously turned gray in the belly. The doctors could not explain his color nor his miraculous recovery a day later. He had several rounds of feeding intolerances and was at one point diagnosed with necrotizing enterocolitis (NEC) that resolved without surgery. He was diagnosed with chronic lung disease/ bronchopulmonary dysplasia (CLD/BPD) and appeared to have metabolic bone issues. A small bleed in his cerebellum was detected, which was worrisome because the few studies on such bleeds suggested poor outcomes. Toward the end of his NICU stay, he had several bradys, dippings of the heart rate, after his feeds. He had moderate reflux. Six days before he left the hospital, he had a laser procedure done on his eyes to prevent retinal detachment from ROP (Stage 3). Three days before he was discharged, he had bilateral hernia repair surgery. He came home on oxygen five days after his due date weighing 4 lbs 13 ozs, which is light for a baby around due date.

While in the NICU, I spent almost every day with Henry, and both my husband and I spent time with him at night. My parents visited him every day, splitting up their time so that Henry was rarely without a family member nearby during the day. I held Henry for the first time on Mother’s Day, two weeks after his birth. A couple weeks later, we were doing kangaroo care with him regularly. I did it during the day, and my husband did it at night. At times, it felt as though there was very little that we could do to help him, but kangaroo care is something that parents can do once babies are stable. A parent’s chest is the next best place for a neonate after the womb. When neonates are closer to due date and their skin is not quite so sensitive, infant massage is something that parents can do as well and has been shown to benefit babies.

 

Coming Home

When Henry came home, we dealt with many issues. He had insomnia, by which I mean he only slept 1-3 hours per day, never for more than 20 minutes at a time. We soon realized that it was caused by Reglan, a medication given for digestive motility. He was also diagnosed with cow’s milk and soy allergies, something that had been overlooked in the NICU. He also required Synagis shots during his first RSV season. Owing to problems feeding Henry, we called our state’s early intervention program when he was a couple weeks old. They had apparently lost Henry’s application submitted by the NICU a couple months earlier. We therefore had to wait a couple weeks for an appointment. The evaluator did her evaluation when Henry was 2 months adjusted. By “adjusted,” I mean his age from due date. A preemie’s developmental age is best measured by due date, not when the baby happened to come out of the womb. Consequently, we treated Henry by his adjusted or due date age. His early intervention evaluation results looked dismal. The results, however, did hasten getting him therapy with an occupational therapist (OT) who specialized in feeding behaviors. She did her assessment when he was 2.5 months adjusted. She diagnosed him with torticollis, a tightening of the neck muscles, which resulted in restricted head and arm movement. The therapist showed us exercises that we could do to help him. She was able to identify one of his feeding issues right away and give us tips on bottle positioning, which helped with feeds immensely. Henry saw an occupational therapist twice a month during the first year and a physical therapist (PT) every week or two as well. The second year we scaled back the frequency of the therapies, but he still received them and was monitored.

Once we sorted out his dairy and soy sensitivities resulting in me eliminating those products from my diet, fortifying my milk with Neocate, an elemental formula, and figuring out how to provide cheek and jaw support during feeds, Henry began to gain weight. Previously under the bands of normality for his adjusted age, by 6 months adjusted he was around the 20-25th percentile on weight, which is pretty much where he has stayed ever since. He was short for his adjusted age but was on the tall side of normal by 9 months adjusted.

One of the highlights of Henry’s first year was no longer needing oxygen assistance at 4 months adjusted. Working with oxygen was necessary and doable, but it made the little things more difficult. If you were in the living room with Henry and needed to get more milk, you had to not only carry Henry to the kitchen but the oxygen tank as well. It was nice to finally be able to change his diaper without having to thread his oxygen tube down his shirt. It was fantastic to see his face without tubing around it.

Given his lung issues, we kept him home the first two years and avoided public areas, especially during RSV season. Avoiding public areas does not mean that one has to be locked inside one’s home. We went for walks with Henry every day, sometimes twice, even when he was on oxygen. Outdoor air is cleaner than indoor air in most cases. Fresh air and sunshine are good for babies and parents. Some parents find the act of avoiding public areas and events, such as the mall, family reunions, holiday parties, or the grocery store, quite challenging. We didn’t. It would of course have been fun to show our son off to friends at parties, but his health was our priority. Looking back, that period of our lives was challenging but also special because of our intense focus on our family.

 

Henry’s Development

Micropreemie development tends to follow a slightly different trajectory from that of full-term babies. The growth curves for micropreemies tend to be a little bit flatter than what other kids experience. The medical issues of preemies sometimes delay the development that would otherwise have taken place. In terms of gross and fine motor skills, Henry was behind on different developmental evaluations until 8.5 months adjusted or so. At that point, the neonatologist at the NICU follow-up clinic felt that he had “caught up” to his adjusted age, which was unexpected given his rough start. It is fairly typical for micropreemies to be delayed off their adjusted age for a couple years. Looking like one’s adjusted age is a best case scenario for many micropreemies given that there are risks and complications from not spending 40 weeks in the womb.

Even though Henry caught up to his adjusted age in terms of development, we continued with physical therapy and also occasionally checked in with the OT. The PTs who worked with Henry were wonderful. His first PT taught us how to challenge him appropriately. Preemies are fragile in many ways, but in order to develop to their full potential, they need to be challenged. It can be hard balancing certain aspects of medical fragility while trying to challenge the child in physical ways so that the child can “catch up” to where he should have been had he been born at his due date. His PT helped us create appropriate expectations and challenges for him. His second PT helped us sidestep a lot of issues by catching things early so that he was able to remain on track. Just because a preemie “catches up” or “is doing well” at a single point in time does not mean that the shackles of prematurity have been lifted forever. The research is clear that preemies are at-risk for a host of things and that some issues do not appear until the preemies are older. Consequently, having someone who can help the parents catch and address issues early helps the child stay on a positive developmental trajectory.

Henry sat up unassisted at 6.5 months adjusted, pulled to a stand and crawled at 8 months adjusted, and walked without assistance at 13 months adjusted. At 12 months adjusted, his speech wasn’t particularly impressive. He said dada but wasn’t consistent in using it to refer to my husband Jeff. After Henry learned to walk, his speech took off at an amazing rate. By 15 months adjusted, he could say about 65 words and use them appropriately. Speech ended up being one of Henry’s strengths. He also had a remarkable ability to comprehend stories. By 18 months adjusted, we read fairly lengthy children’s books, and Henry would fill-in-the-blanks if I left off the end of sentences in his favorite stories.

A little over a month before his second birthday, we had an evaluation done by one of our favorite OTs, the one who had initially evaluated him at 2.5 months adjusted. She was impressed with Henry’s speech and ability to pay attention to various tasks. Visual-motor integration was one area tested. He was at the 35th percentile for his birth certificate age and the 75th percentile for his adjusted age. The OT recommended that at 2 years old, we start thinking about him by his birth certificate age.

We never bought into the idea that preemies “catch up” to their birth certificate age, even though it is something therapists and doctors like to claim. As we see it, development starts at conception. Children’s bodies don’t get to skip developmental stages just because they were born early. The preemie’s body never “speeds up” to look like the age on the birth certificate. But as kids get older, there is so much natural variation in a population that a 3.5 month age difference between adjusted age and birth certificate age matters less and less. At age 2, we had no problems making the switch, referring to Henry by his birthday age.

 

Siblings for Henry

Before Henry’s second birthday, our daughter Robin joined our family at 18 months of age. She was very shy, tentative, and quiet. Henry was not. He was very talkative, bold, and loud. It is hard to overstate how Henry and Robin have helped each other grow and develop. Robin came out of her shell. And Henry learned how to share and play with others, something he never had to do before as we kept him at home the first two years because of the challenges that micropreemies have with their lungs. Despite their different personalities, Henry and Robin were like peas on a pod. Having siblings close in age has been wonderful for both of them. We officially adopted Robin the following year.

A couple months before Henry turned 3, he was evaluated by the public school system as kids are when they have been in the state’s early intervention program. It was determined that he no longer needed services. Instead of physical therapy, we enrolled Henry and Robin in dance and then later gymnastics. Both were good for developing body control, balance, coordination, and strength. We also enrolled the kids in swim lessons, which was initially hard for Henry owing to his lack of body fat. But he’s gotten the hang of it.

Shortly before Henry turned 3, we took in a little girl named Ada who was 2 days old. Henry and Robin handled the new addition to our family with grace. There’s no question that having three kids is harder than having only two. Once the kids realize there are more children than adults, all sorts of mischief happens. We have been impressed with how generous and loving our kids are to each other. We officially adopted Ada this past December.

Our children have different personalities and strengths. Henry is creative, cerebral, confident, independent, and, dare I say, argumentative. He is rather Clintonesque in his parsing of language to get a result that he wants. Robin is sweet, quiet, helpful, and athletically gifted. She has excellent body control for her age. She’s also very artistic with exceptional fine motor skills. Ada is the consummate extrovert, the life of the party. She’s the upbeat kid around whom a room revolves. She figures that if Henry and Robin can do something, she can do it too. As a result of watching Robin, Ada started doing cartwheels at 2.5 years. They learn a lot from each others. They of course argue like all siblings do. But they also motivate each other to try new things and genuinely enjoy each other’s company.

 

Residual Effects of Prematurity

For the most part, we have worried less and less about Henry’s rough start as he has gotten older. It would be foolish, however, to think that Henry is no longer at-risk or that he is the same child that he would have been had he been born in August instead of April. Unfortunately, it isn’t unusual for “issues” to appear when preemies are in elementary school , especially around age 8 when learning moves from concrete forms of reasoning to abstract ones. That said, we have many reasons to be optimistic about Henry’s future. Henry’s kindergarten has an accelerated curriculum that has given him no trouble. He is adding and subtracting double digits and able to fill in missing values into equations (e.g., 3 + ___ = 10). He already knows most of the 100 sight words plus color and number words that are expected by kindergarteners by the end of the year. Most importantly, he does well on logic questions and reading comprehension. Nevertheless, given his history, we have to be mindful that issues could arise. And if they do, we will get him help right away.

Henry has worn glasses since he was 2.5 years old. This is a result of his prematurity. In true Henry fashion, his favorite glasses are as bold as his personality…noticeable blue Sponge Bob frames.

We have been concerned at times over Henry’s fine motor skills. As a baby and toddler, Henry had some mild hand sensory issues. He was an exceedingly clean eater and rarely engaged in art projects at school because he did not like getting his hands dirty. In preschool last year, he rarely came home with art work. We had him and Robin enrolled in an art program last year to encourage their fine motor development. Henry held the record for having the fewest number of pieces showcased on the class’ Facebook page. He’d draw a single line on page and consider it good enough. Then, last March, Henry was introduced to the Angry Birds game. They became a bit of an obsession — an obsession that resulted in him wanting to draw. He spent the summer drawing pictures of Angry Birds and Pigs. In August, he spent a couple days making a six volume cartoon book series on Angry Birds. His freehand drawings are now quite detailed.

 

Henry 360

We could not be more proud of Henry’s accomplishments. When he was born nearly six years ago, we were hopeful but not particularly optimistic about his future. The attending neonatologist on the night of his birth was fairly blunt, and appropriately so, telling us about the challenges that most micropreemies face. I did quite a bit of research on preemie development and child development after Henry was born. I strongly believe that one should look at data when making decisions for one’s child. I also know that there are a lot of things that haven’t been well-researched when it comes to preemie development and that variables, such as parental involvement, are often missing from statistical models predicting preemie outcomes. I don’t think that parental involvement can necessarily overcome all obstacles put forth in a child’s path by an early birth, but it can minimize the constraints that prematurity often brings and help children maximize the gifts they possess.

Today, Henry is a fun-loving, active, creative child. He plans to be a builder. Our home is filled with creations built to house Henry’s Angry Birds and Pigs. He very much enjoys spending time on the iPad and computer. We suspect that his reading is in part a function of his desire to find new apps on the iPad or his search for Mario and Angry Bird videos on YouTube. He also likes bouncing on our trampoline. It is one of his favorite activities. He loves playing imaginative games with friends at school and with his sisters. He enjoys tales involving heroes and villains and daring rescues.

The other night, Henry overheard me explaining to someone how he was born very early. He was an April baby who should have been born in August. Henry said, “Mom, I didn’t want to be born in August.” That’s one wish that I wish hadn’t been granted to Henry. Prematurity is never an ideal situation, but Henry has done exceptionally well despite the tough road he had to travel to get where he is today.

Photo Credits:
Henry Running taken by Jake Gillespie
Henry at Gymnastics taken by Kate Kenski
Henry at the Aquarium taken by Kate Kenski
Henry Draws the Lorax taken by Kate Kenski
Henry Dancing taken by Kate Kenski
Henry Having Fun taken by Jake Gillespie

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PREEMIE UPDATE: Jack Ryan Lesoine

In our February edition of our Preemie Family newsletter we learned about the handsome miracle Jack Ryan Lesoine, a 28-weeker who was 2 lbs. 1 oz. at birth and spent 112 days in the NICU.

Read more in an update by his mother, Heather. . . 

by Heather Lesoine, Jack’s Mother:

“Today I caught myself smiling like crazy and I thought to myself how amazingly happy Jack has already made me, despite his being sick. I’m mostly trying to get through each day with him and not worry too much about the future.”

This quote is from the early days in Jack’s NICU stay. We are now 2 years and 5 months into our journey with prematurity and the biggest thing I’ve learned is that this journey does not end at discharge, as most media portray and most people believe. I still try not to worry too much about the future and enjoy each day with Jack. However, I always struggle with telling our “preemie story” because, well, we are still living it. What has helped me navigate this journey have been the connections with other preemie parents and hearing the stories of their amazing little ones. It’s always my hope that at least one preemie parent feels that connection after hearing our story. So, here goes nothing:

Does it count as giving birth when I didn’t “give” anything? Something, many things, were taken from me and from my son, and my husband too. From my entire family, if you really think about it. Jack was taken from me too soon, my 3rd trimester was taken, my ideal birth, my hope for a healthy child and let us not forget that Jack’s chance at a healthy start to life…gone. All taken…even the little, trivial things, like being pregnant at my own baby shower, birth announcements, that first bonding moment, meeting the family, getting fat & uncomfortable as my due date neared. Yes, one might think that I escaped that uncomfortable third trimester. But I beg to differ, because I did suffer through my third trimester…staring at my son through isolette walls, waiting for 11 days to hold him, leaving him with strangers every day, and wondering every day if he would live to see the next…and unlike a normal fetus who grows and thrives in the third trimester, my fetus, my boy…suffered and was forced to develop in an unnatural environment. All because my body could not handle being pregnant any longer. Looking back, I now know that my body was telling my mind that something was not right. Just a few days before I was admitted, I had a dark thought and wondered to myself, “What if I really don’t want a baby?” I had been thinking about all the things we’d miss out on and the difficulty in raising children these days. My mind was telling me to get ready, because I was going to soon know just how much I really wanted that baby. My baby boy.

I have a voicemail that I save…I have been saving it since August 13, 2010, just three day into Jack’s little life. It’s not the usual congratulatory message one receives when giving birth (there’s that word “giving” again), but it’s been saved anyway. Don’t get me wrong, many people offered up congratulations in a not so joyous time. And I’m glad. If they hadn’t, I would have been hurt. But this voicemail, from a friend, my best friend, was exactly what I needed to hear then and what I still need to hear, over 2 years later. My friend called to check on me, to see how I was feeling and gave me the very thing I needed to hear…that this was not what we had planned and things did not go as they should have. That acknowledgement still brings tears to my eyes now, as I’m writing, as it did the first day I’ve heard it. Since that day, I’ve been wrestling with the lack of acknowledgement that is given to the very real, and very unpleasant, experiences that come with preeclampsia and prematurity. Both are often downplayed and glossed over. Throughout the past year I’ve learned many things about both conditions and the most startling fact that I learned is that too many are uninformed and uneducated about the 2 P’s. It is my hope that with Jack’s story, more people will be willing to acknowledge what prematurity can do to an infant and his family.

I had entered the hospital 28 weeks, 2 days pregnant with severe preeclampsia. We were told that delivery of our baby boy was imminent and that we would need to transfer to a hospital that could care for such an early, sick baby. On the same day that we chose a name for our baby boy, we were also told that it might not be possible to save both of us. I have to say that I was completely unaware of what being born prematurely entailed, but I feared for my own life and definitely mentioned that “I didn’t want to die” to my family. Jack entered the world at 10:12pm on August 10, 2010 with a little cry and a “Hello, Jack” from the surgeons. Before I could even see him, he was whisked away to the NICU. I was unable to see him for over 24 hours, but my husband had reported that he was looking good and very small. He weighed 938 grams or 2 pounds 1 oz and measured 12.5 inches. Seeing him for the first time was awful and awesome at the same time. He was so perfect, yet so very, very tiny. His nurse gave me one of the tiniest diapers I had ever seen and I kept that diaper with me for a long time. Any expectations that we had about pregnancy, childbirth and parenting had just been thrown out the window. Our son’s first home was a hospital NICU and his first bed was an isolette. We weren’t able to hold him in our arms until 11 days after his arrival, and even then we could only hold him when he was stable enough to do so. Prematurity wreaks havoc on a little baby’s body and on his parents. Jack was struggling to breath and was fighting for his life, something no innocent newborn should have to do. We were thrown into a world of apneas and bradys, TPN and C-PAP, and the notorious BPD (Bronchopulmonary Dysplasia) – Jack’s major diagnosis for his immature and damaged lungs. Jeff and I began spending all of our spare time with Jack in the NICU, wondering every day if he would survive. He spent almost 2 weeks on a ventilator (oscillator), then months on C-PAP, Si-Pap, and Vapotherm and finally nasal cannula. We were not prepared for all of the dangers of prematurity, such as brain injuries, blindness, and lung disease. I naively thought, as many do, that premature babies just need to gain weight and go home. I quickly learned that I was sadly mistaken. Throughout Jack’s 112 day stay, he was cared for by amazing doctors, nurses and therapists. Some of them are even like family to us still, two years later. Yet, I always have trouble answering when someone asks what our NICU experience was like, because I have conflicting views. For the most part, it was awful to have to watch our little boy struggle to breathe, struggle to eat, struggle to survive and to have to leave him, over and over again, for 112 days. But, knowing that he was being cared for by an exceptional NICU staff helped lessen some of our anxieties and fears.

After a 112 day stay, we left the NICU with our definition of miracle. Babies at Jack’s low birth weight and early gestation don’t always have the best outcome. We were blessed that Jack only had one surgery (for inguinal hernias) and didn’t seem to suffer from some of the more severe preemie issues (NEC, ROP, PDA surgery). Unfortunately, we soon realized that prematurity does not end when one leaves the NICU. Because of his lung disease, Jack came home on 24-hour O2 support and a feeding (NG) tube and many medications, along with multiple doctor and therapy appointments. Basically, the hospital came home with us (without those awesome nurses and doctors). It was completely and utterly overwhelming and exhausting. The worst, for me as his mom, was being unable to feed him and give him nourishment “naturally,” from the breast or bottle. I did pump for 4 months (which gave Jack breast milk for almost 6 months), but I was too stressed to keep up with the pumping when he came home. The feeding tube kept him well-fed and plump, but made me so anxious that he would never eat normally. Jack eventually no longer needed the feeding tube (at 8 months) or the 02 support (at 10 months).

Because his lungs are still fragile, we take extra care to keep our miracle boy healthy and we are vigilant about his nutrition as well. It’s been a long, emotional, exhausting, and amazing journey. Jack is now 28 months old and has been healing from his early arrival with the help of many doctors, specialists, and therapists (OT, PT, ST), and of course the love of his parents and family. He loves to run and play, trucks and trains, read books, swim, watch Disney Jr. and eat anything that involves cheese. He recently started to use words instead of signs too! But, most of all, he is happy! And it is my great hope, that the “healthy” will come.

There’s so much more to say about how prematurity has affected not only Jack, but me as a mother. So many don’t understand what it’s like to start life as a parent, as a family, in such devastating circumstances. It affects your perception of every experience that lies ahead, for better or worse. I have been angry and anxious, joyful and sad, overwhelmed and excited, frightened and blessed. Some have noticed my anger and my sadness and I wonder if they think that now that Jack is “fine,” that I should no longer feel these things. But I know better, from connecting with other preemie parents. These feelings are normal and often necessary to survive this journey through prematurity. And my sadness and anger are justified, I feel, because they are directed toward the unfairness of our little boy having to start life in such a precarious position. He is healing and so am I, by doing my part in creating awareness about prematurity. We would love to have you join us on our journey at: http://jackryansjourney.blogspot.com/

Photo Credits:

All pictures courtesy of Heather Lesoine.

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PREEMIE UPDATE: Alejandro

In our January edition of our Preemie Family newsletter we learned about the truly courageous Alejandro de Jesus Fernandez-Khonyongwa, a 24-weeker who was 645 grams at birth and spent 5.5 months in the NICU and then was re-hospitalized 6 more weeks for retinal surgery and RSV.  

Read more in an update by his mother, Gigi . . . 

by Gigi, Alejandro’s Mother:

Where do I start? Do you want to long version or short version? How do you sum up in a few words an experience that shook your being to a core – and in many ways are still causing you to feel a few tremors – albeit more positive ones now?

So many stories and emotions . . . I guess the only way I can share it is to tell you about our munchkin in ‘waves’ as that’s truly how I feel our life was/is:

1^st Wave: Finding out we were pregnant with twins in 2006 after losing our 1^st pregnancy in the 2^nd trimester. This wave ended with us losing 1 twin in utero and and couple of months later, Alejandro being born at 24 weeks weighing 645 grams at Chelsea and Westminster Hospital in London, England. I am still shocked to this day how I could visit my ob/gyn at 9:00 a.m. on August 24^th and by at 1:40 p.m. that same day, my waters broke. I was 23 weeks and 5 days pregnant. At the hospital, he was given a 0 to 5% chance of survival but we were told to expect the former. We felt so alone because we were living in London, England without any family around (my family was in the USA and my husband’s was in Spain).

2^nd Wave: At times this seems blurry and at other times, crystal clear. A lot can happen in a 5 ½ month NICU stay and yes, a lot did actually happen. Alejandro had all of the micropreemie ‘gifts’ like PDA, IVH, long-lines, short-lines, jaundice, NEC w/ perforation(requiring emergency surgery and a subsequent colostomy bag), chronic lung disease, multiple resuscitation episodes, and his doozy of a thing that caught all of us by surprise – severe ROP – which progressed rapidly (over a couple of days) leading to total retinal detachment in his left eye and most of a detachment in his right. He eventually became legally blind. This really knocked us because we were focusing on all of his organs to keep him alive and regardless his eyes were being checked weekly.  It has now become his primary ‘preemie gift’. 98% of what a child learns is through what he sees, so due to his vision loss and micro-preemie birth and complications, Alejandro has some developmental delays.

3^rd Wave:  Post-NICU (initially): Hmmm, this was a combination of a million ups and downs and it keeps going. We were home for 1 ½ weeks before we flew from London to the USA (Michigan) on a medically-assisted flight for Alejandro’s 1^st of many retinal surgeries. He had a number of vitrectomies (a very invasive surgery which is supposed to help his retina ‘fall back’ and reattach) and lensectomies (where they removed both of his lenses to try to save his retinas). Due to him no longer having lenses, he can no longer focus.

The biggest trial of those initial post-NICU days is that it encompassed one of the worst days of my life. Unbeknownst to us (and many at the hospital), the hospital was having a RSV epidemic (and frustratingly enough Alejandro had not been given the Synagis injections in England because he wasn’t eligible – another long story . . . ), and we got caught right smack in the middle of it. Post-op, Alejandro was discharged after a couple of days. He was SPO2 levels were fluctuating but the nurse felt that he was more stable than not. My gut felt otherwise but I went along with her (that was one of the last times I didn’t trust my gut). Alejandro had acquired severe RSV and turned blue as we walked to our car! I thought: my baby has been through so much for the past almost 6 months and I wasn’t about to lose him now!  I screamed when I saw his blue-ashen face and raced back in the hospital. The nurses immediately checked his O2 levels and were shocked. And way faster than I could process it, Alejandro was put on O2, re-admitted to their NICU and eventually to their pediatric ward, where we stayed for 6 weeks!  A hospital stay that was supposed to be 2 weeks ended up being 1 ½ months. We felt alone again because we didn’t know a soul in Michigan and was stuck in this hospital. Thankfully my Mum and other family members flew up to Michigan to be with us for a few days.

4^th Wave: Fast-forward to now and this wave is ongoing: I’ll try to sum up the past 6 years in a few sentences. To date, Alejandro has undergone 10+ surgical procedures on his eyes (whew!) and has had a lot of respiratory-related illnesses. After the first RSV scare, He remained on Synagis for three more winter seasons.   But to this day, colds still knock him out and we are constantly trying to prevent another episode. Despite all of this, Alejandro is a bubbly, giggling and increasingly confident little boy. I often forget that he is blind (and this is fact about him that I love). When you meet him, his personality wins you over in an instant. We’ve never treated him like our blind son Alejandro but rather our son Alejandro, who happens to be blind. His blindness doesn’t characterize him but is a part of his character.

Alejandro is currently in kindergarten and is learning Braille and how to use his cane. He is learning about his environment in so many amazing ways. He ‘sees’ with more than just his ‘eyes’ – and has taught me that you don’t need sight to have vision. I am in awe of what he’s accomplished so far. Education for a child whose blind is a BIG hurdle as it affects how they learn on so many levels. There have been challenges and I know that there will be many more but I’m confident that, like always, Alejandro will come out on top with a BIG grin on his face – and in the process, teach me (and others) a thing or two about life! We are truly blessed to have him . . .

Photo Credits:

All pictures courtesy of Alejandro’s parents.

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