November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our thirteenth profile is of an amazing set of twins named Charlton and Savannah.

Charlton and Savannah were born at 24 weeks exactly on April 10^th 2008. Dad Charlton says that he and his wife do not know why their little ones were born early.

This story was written by his wife for the March of Dimes.

When my husband and I found out that we were expecting twins, we were so excited. We couldn’t wait to share the good news with our friends and family.

Most people who are expecting a child dream of what their pregnancy and birth are going to be like. Some, including me, have dreamed about their first days of life and who they are going to look like, what type of personality they are going to have and if they are going to sleep through the night.

I can’t think of one person, including me, who dreamed about their child or children in my case being born premature.

At just six months into my pregnancy (4 months before my due date) I learned at a routine ultrasound that my life was going to change forever. During the scan the technician was telling me how good the babies looked, but she then stopped and politely excused herself. She then came back with the doctor. The doctor then told me that I was 3 cm dilated and in labor. I called my husband to let him know what was going on, but was too upset to even speak. The doctor then got on the phone to fill him in. They transported me across the street to Morristown Memorial Hospital. Once I arrived at the hospital about 10 minutes later, my little girl’s water broke.

Once my husband arrived at the hospital we were met by the Neonatal Intensive Care Unit (NICU) doctor. He basically said that if our children survived the delivery they may have some serious handicaps as a result of their prematurity.

The hospital tried to stop the labor, but just after mid-night we headed to the Operating Room. There were about 20 people in the room, not quite the peaceful birth I had dreamed about so many times. There were teams of doctors and nurses ready to work on each of the babies.

The decision was made to deliver Savannah since her water broke. The doctor wanted to try and keep Charlton inside for as long as possible.

Savannah had a very rocky delivery. When she was born the silence in the room was very eerie, you could hear a pin drop. I remember lying there and looking over my shoulder to see her. But all I could see was a team of doctors and nurses working on her. She never made a sound. She weighed in at only 1 lb. 8 ounces.

In the midst of all of this, my doctor was reporting that Charlton needed to be delivered because both my blood pressure and his blood pressure were dropping. About 45 minutes later Charlton Jr. arrived via C-Section. When he was born I did hear a faint little cry. It wasn’t long before his team of doctors and nurses began working on him as well. He was smaller, weighing in at 1 lb. 6 ounces.

I was then moved to recovery. About an hour later and no updates, we were then escorted to the NICU to see our children for the first time. I had no idea and could not even imagine what a baby born at 24 weeks would look like.

The NICU was very dark and depressing. They wheeled my stretcher into a little room where there were a bunch of people huddled over two little isolates. Most new moms would be overjoyed to meet their little bundles of joy. In our case it was devastating to see two little babies who were so sick and hooked up to so much equipment. They were about the size of my hand and just slightly longer than a ball point pen. Their heads were smaller than a tennis ball and their skin was completely transparent. Their eyes were fused shut and their little ears were still not completely developed and Savannah was purple from being so badly bruised during delivery. It was probably one of the saddest days that I can remember.

The best way to explain life in the NICU is a roller coaster ride. We soon found out how that roller coaster worked. For the first few days they were doing ok. We then got a call about Charlton. His intestines perforated and had become septic. He needed life saving surgery. My husband and I rushed to the hospital, that hour and a half ride from PA to NJ seemed like a lifetime. We sat there waiting to hear how the surgery went. Thankfully it was a success. We then decided to head home to get some very much needed rest. Not even 24 hours later we got another phone call saying that our daughter needed the same life saving surgery. We then rushed back to the hospital. Thankfully her surgery went well too. Days after surgery, Savannah developed a really bad infection.

The worst day that comes to mind, which was about a week after the birth was when we arrived at the hospital and were escorted to a room to meet with some doctors, nurses and the social worker. We were then informed that our little girl had a severe bleed in her brain. A bilateral bleed of grade three and four. A level four is the worst. They told us if she survived she probably would have a limited quality of life. They also mentioned that both babies only had a 16% chance of survival.

My husband and I sat outside the hospital that day in the Gazebo, just devastated, we cried and we prayed for strength. We then decided to have our babies baptized that same day.

In the upcoming days we had some good and many bad. Our son had a difficult time with his lungs. His lungs kept collapsing.

Our daughter also had a host of issues and couldn’t breathe on her own for about four months.

It was about a month and a half before we could hold our babies, even then they would stop breathing while we were holding them. It was quite terrifying. The list of medical procedures, blood transfusions, infections and issues are endless. They spent about 4 ½ months in the NICU before they were allowed to come home.

Prematurity does not end in the NICU – Our twins are now 17 months old and still need a lot of follow up care. We have physical therapist, occupational therapist , speech therapist and even teachers at our house weekly. We also have a range of specialists that follow our babies. They include, Pulmonary, Neurology, Ophthalmology, ENT, Gastro, Developmental, Orthopedic as well as their pediatrician.

Over all, they are doing far better than what anyone could ever imagine for a 24 week baby, especially for twins. We won’t know the true effects of their prematurity until they are 3-4 years old. They are at high risk for Autism and Cerebral Palsy and well as learning delays.

Even though it seems like our life is very difficult, which it can be at times, we feel very blessed and thankful for our miracle babies. The March of Dimes has been instrumental in the research and development that gives children like mine the chance at life. Just to give you one example, both of our children received Surfactant Therapy, which helps aid the lungs. I don’t know that are twins would be here today without that therapy. And to that, we are extremely grateful.

Dad says that although Charlton and Savannah are delayed, they are both eating well and walking. They have a big sister named Ashley who was born full term.

If Charlton had one piece of advice for a new preemie parent, it would be: Hang on, things will get better.

I asked Charlton to describe his children in one word and he said “MIRACLES.”

I don’t think any of us can argue with that!

If you would like to read more about these two amazing children, you can go here to OUR MIRACLE BABIES

Other Amazing Preemies:

• Preemie Profile: 25 Weeker Tyler
• Preemie Profile: 24 Week Twins Bryce and Chloe
  
• Preemie Profile: 29 Weeker Charlotte
  
• Preemie Profile: 26 Weeker Emery

November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our twelfth profile is of a little guy named Tyler Kenneth Brown.

Tyler was born on September 21st 2005 at 25 weeks and 3 days. Mom Nancy does not know why Tyler was born early. She said that neither Tyler or herself had any infections after delivery, but she did have a perinatlogist say it was an incompetent cervix.

At birth, Tyler weighed in at 1 pound 11 ounces. His NICU story was some what uneventful. Most of the events are the after math of preemiehood. Tyler was born in a hospital that was not equipped for a preemie with issues let alone a preemie as early as Tyler. They were life flighted as soon as he was born. Dad Dallas saw his little body off on a helicopter and followed in the car.

Tyler had a PDA (Patent ductus arteriosus) done at three days. The doctors had wanted to get it closed because his brain was bleeding. Mom says they didn’t have the luxury of waiting to see if it would happen on his own. His surgery went well. He did have a grade four bleed on one side and a three on the other. After about 30 days and an up and down of his head growing too much they transferred us to yet another hospital to have brain surgery. He had a reservoir placed after a month in the NICU. Mom said they ended up with the greatest care and found a great team of doctors at this very hospital.

Ty had one seizure after his NICU reservoir placement and hasn’t had one since. Mom is always on pins and needles with it. Tyler was not shunted after the reservoir placement but he did end up with a shunt later. He was on the vent for about 63 days. He had a hard time getting off. He really was kind of lazy. Tyler came home on oxygen but was weaned pretty fast.

Right before mom and dad were ready to bring Tyler home, he had a bad ROP (retinopathy of prematurity –a disease of the eyes) exam. He needed surgery FAST. Tyler had ROP surgery within 72 hours of finding how severe it was. It saved his eyesight but he does still has poor vision. He was pretty fast bouncing back. Tyler was off the vent quickly and on to growing.

Tyler spent 93 days total in the NICU before coming home on December 23rd. Some of the ups and downs happened fast after the NICU. Mom and dad brought him home a day before his due date. He was just under six pounds. In January he was diagnosed with craniosynostosis (a medical condition in which some or all of the sutures in the skull of an infant or child close too early, causing problems with normal brain and skull growth) and had to have surgery on February 14th. The doctors took out his reservoir at that point.

In April he got really sick and almost died. Doctors found out he was in need of a shunt. His bones had grown back and he didn’t have enough space for his brain to expand and he was sick. An emergency shunt was placed in April. Tyler screamed for an entire month and a nice doctor took pity on me and said he needed a shunt revision. Once he had the new shunt placed, he did awesome. One year after his first skull surgery Tyler had to have another one. This one was a total skull reconstruction. He did amazing well. He bounced back quickly and for that mom is very grateful.

In Tyler’s second year, he had very little downs. At the end of year two he was diagnosed with stage two cerebral palsy and he was and is walking on his own. Tyler is a good gimpy walker and has so much energy. Tyler is in preschool and is doing very well with that.

Currently he is being evaluated for Sensory processing disorder and he has his own issues. In September of 2008 Tyler had a shunt malfunction from a recalled shunt. They fixed it right before his 3rd birthday. Six months later, in February of 2009 Tyler had another malfunction and his tubing had broken. Mom is on edge because they are just six months out from the last surgery.

As for other children, mom Nancy and her husband Dallas have tried but were unable to get pregnant. They are really not sure however that they want more children or as she says, more correctly they aren’t sure to dare go through what they have with Tyler. They love him but it is very hard.

If Nancy had one piece of advice for a new preemie mom, it would be this: Keep going. You will always doubt your choices but do what you feel is right and keep your chin up. You will never feel you did enough or loved enough or whatever. BUT you are doing what is best. You are the mom.

I asked Nancy to describe Tyler in one word and she said “FUNNY”.

If you would like to read more about Tyler, go here to Miracles Happen

Other Amazing Preemies:

• Preemie Profile: 25 Weeker Maggie Grace
  
• Preemie Profile: 24 Week Twins Bryce and Chloe
  
• Preemie Profile: 29 Weeker Charlotte
  
• Preemie Profile: 26 Weeker Emery

November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our eleventh profile is of a sweet little girl named Charlotte. This family and story is very near and dear to my heart.

Charlotte was born on April 7th 2007 at 29 weeks and 5 days. The immediate reason for Charlotte’s premature birth was fetal distress. Her heartrate was dropping down to thirty beats per minute. There was no known reason for why this was happening. Mom Kelley also said she had low amniotic fluid and Charlotte was severe IUGR (IntraUterine Growth Retardation.)

At birth Charlotte weighed only 474 grams. As for the NICU stay, Initially mom and dad (Kelley and Vann) were hoping to only remain until she no longer needed oxygen. Charlotte was never on the vent or bipap, just nasal cannula. She had reached a weight of at least pounds pounds, however it quickly became clear that an extended hospital stay would be required. Oxygen as a long term requirement was obviously needed for her as she was diagnosed with pulmonary hypertension, reflux, chronic lung disease, heart defects (atrial septal defects and ventrical septal defects–tiny holes) and she refused to eat by mouth. Charlotte was later also diagnosed with dysphagia–a swallow dysfunction preventing her from eating by mouth because of aspirating the fluid into her lungs.

During her NICU stay she endured 20+ blood transfusions, an arsenal of tests, surgical procedures including a gastrostomy tube placement (surgically placed through an opening from the abdomen to the stomach) and a heart catheterization (doctor threads a catheter-thin flexible tube from an artery or vein in the neck, arm or thigh into the heart arteries or inside the heart.) Charlotte received daily sticks and pokes, more medications than mom can almost remember including an overdose of potassium at one hospital that sent her into cardiac arrest.

Charlotte had fluctuating electrolyte and mineral levels, multiple feeding issues, and reflux that we could not really control causing daily gagging/retching/choking. She also had issues with desaturations (A drop in oxygen levels due to apnea, obstruction or other medical conditions) daily.

The Lord was merciful to us and answered so many of our prayers for Charlotte. She never had any brain bleeds, all her cranial ultrasounds were normal, her eyes were developing appropriately as far as we knew despite long term oxygen therapy, she passed her hearing screening, and a spot on her kidney (which the doctors were watching very closely due to the high increase of kidney problems in two vessel cord babies & an elevated kidney hormone) completely disappeared! What a miracle! We always felt optimistic and overjoyed at each new milestone no matter at what age she achieved it.

After spending six and a half months at three different NICUs in the Atlanta area, Charlotte came home. Charlotte was on oxygen, was being fed with a feeding tube, and hooked up to the standard monitors for preemies (heart and oxygen saturation rates). She was on more than half a dozen meds. Charlotte still struggled with all the issues mentioned above and Kelley and Vann were led to believe that there was a chance that she would eventually outgrow and overcome the need for all her equipment-the oxygen, the feeding tube, as well as her reflux and heart defects.

Surgery was always on the radar for her heart if the holes did not close up as she grew. At nearly 7 months when she came home for the first and only time, she weighed in at just over 8 1/2 pounds. Charlotte was considered very medically fragile because of her lungs and heart and we were well aware that any respiratory illness could very well take her life. She was followed by a cardiologist, a pulmonologist, a gastrointerologist, and pediatrician. Despite all this, we were confident that–with time–she would have a full and enjoyable life and be able to do so many of the things that other children could do.

What mom and dad were not aware of (and uneducated about at the time) was the fact that her aspiration issues should have been addressed before coming home due to her reflux. Everything she was refluxing had the potential to be aspirated into her lungs.

After a mere six weeks at home, Charlotte developed an aspiration pneumonia that landed her back in the local Children’s hospital they had just left. A viral infection on top of this put her in the PICU (pediatric intensive care unit). Her premature body had difficulty fighting things off and after one week in the hospital she suddenly became much worse. Her lungs with all of the damage were unable to sustain oxygen levels. This was even with the maximum amount of support available in the medical field. After four long weeks of fighting, being on the ventilator and oscillator, dealing with the infections and treatments and multiple resuscitations, sweet Charlotte went home to heaven. It was January 14th 2008 and she was 9 months and 7 days old.

Kelley and Vann lost another baby girl at only 12 weeks 2 days due to a possible infection. They were however recently blessed with the birth of their son Owen who was born at 36 weeks after preterm labor.

If Kelley had one piece of advice for a new preemie mom, it would be this: Educate yourself on your child’s issues. You are the best advocate for your child. Look for support from others–online groups or local support groups. Parents of preemies encounter problems that most parents never even hear about. It can be a lonely road and you need people around you who understand the unique issues surrounding preemies and the equally as unique set of emotions that comes with having one and caring for one.

I asked Kelley to describe Charlotte in one word and she said “FIGHTER.”

There is no doubt in my mind that Kelley is right in describing Charlotte. This story has always been a part of my heart and Kelley and Vann are just amazing parents who deserve nothing but the best in the future. Charlotte was so very loved and is missed tremendously by so many.

If you would like to read more about Charlotte and her journey you can go here to Charlotte Humphrey

November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our tenth profile is of a little beauty named Margaret “Maggie” Grace.

Maggie was born on August 25th 2005 at 25 weeks 2 days. Mom Dana had extremely low amniotic fluid. Maggie was also an IUGR (IntraUterine Growth Retardation) baby. Dana had developed severe pre-eclampsia (a condition characterized by pregnancy-induced high blood pressure, protein in the urine, and swelling (edema) due to fluid retention), which turned to HELLP syndrome (a complication of severe preeclampsia).

Maggie at birth weighed only 15 ounces which is about 425 grams. She was in three NICU’s. The first one she was in for two days, the second one for a week and then the last one for four and a half months. Maggie was born right before Hurricane Katrina and was evacuated from New Orleans to Baton Rouge. Mom and dad did not see her for a week as they were in one hospital and she was in another.

Overall it was a rough four and a half months. Maggie was on and off of the vent and had many infections through her stay and almost didn’t make it several times. There were many nights spent sleeping in the NICU waiting room praying that no one would come tell mom and dad any bad news.

While there we met many people in the same situation. One was a family who lost their preemie four months after she was born. That was hard as Maggie was in the isolette right next to her and when Maggie had ups this little one had downs and vice versa.

Maggie had a fundoplication (a surgical operation for gastro-oesophageal reflux disease in which the upper part of the stomach is wrapped around the lower esophagus) done along with a gastrostomy (A method to facilitate feeding in which a tube is surgically placed directly into the stomach, through the abdominal wall) while in the NICU. Maggie did nipple feed for a while but it was not going great and she suffered from aspiration (milk entering into the lungs) and the doctors felt this was the best option for her at the time. We had some of the best doctors and nurses we could ask for while in the NICU, who made the whole ordeal easier for us.

Mom and dad had clothes and blankets for Maggie made by volunteers and she always had decorations in her corner and on her isolette for every occasion. Mom and dad wanted to make it as close to home as they could. They found out after a month that by playing music-Disney Princess instrumentals in fact-from a CD player, it would calm her down and help her oxygen saturations.

All in all Maggie’s stay was a roller coaster. Ride up and down with the twists and turns. Thankfully this little fighter made it home safe and sound! The technology they have today is amazing and just miraculous in moms opinion!

As for lasting effects from her prematurity, Maggie is little but that is basically all. She had her feeding tube removed in May of 2009 and now eats by mouth. She has great vision and hearing and no other delays except for needing some speech therapy in school as she can not say some letters that well. Mom feels very blessed.

If Dana had one piece of advice for a new preemie mom, it would be this: Have Faith. Do what feels right to you and know that these babies are some of the strongest fighters ever!

I asked Dana to describe Maggie in one word and she said “AMAZING.”

What an ordeal with the NICUs! She sure is an amazing child!

November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our nineth profile is of Bryce and Chloe.

Bryce and Chloe were born on May 26th 2009 at exactly 24 weeks. Dad Jason said “yes and no” to whether or not the reason was known for the premature birth of the babies. Jason said that he went in with his wife to the OB for a regular check up at 22 weeks. Her doctor discovered that she was 2 cm dilated and 100% effaced with bulging membranes (amniotic sac). This was less than two weeks after a completely normal ultrasound appointment. Christie was taken by ambulance to the University of Minnesota Medical Center, where the maternal-fetal medicine specialists told us that she was in serious danger of preterm premature rupture of membranes (PPROM), and that the twins could be born at any time. She was put on hospital bed rest and constant monitoring from that moment on. Three days later, her membranes did rupture, but the twins held out for another 11 days before they developed complications and had to be delivered by emergency c-section.

Jason says that they still have no idea why Christie’s body effectively decided it was “time” nearly 18 weeks early. There were no signs of infection, and she didn’t have any complications or warning symptoms. Her OB-GYN speculated that since she has a rather small uterus, the size of the growing twins felt like a full-term baby to her body far too early.

At birth, Bryce weighed in at 580 grams and his sister Chloe was 555 grams. Until they were born, everyone thought that Bryce (Baby A’s) amniotic sac was ruptured, and that he was holding on for his little sister. As it turns out, it was Chloe’s sac that had ruptured, which may in part account for her slightly smaller size and subsequent complications. Both of the twins were stable after intubation in the delivery room, with Apgar scores of 4/8/9 for Bryce and 3/5/7 for Chloe.

In all but one respect, Bryce was always the stronger of the two. The day after he was born, they took him off the ventilator and he was breathing room air unassisted for close to four hours! Both twins started off on mechanical ventilators, and were then moved to high-frequency jet ventilators. They both had PDAs (patent ductus arteriosus), but Bryce’s closed with medication, while Chloe required surgery. Both twins had Grade 2 IVHs (brain bleeds), but Chloe’s was bilateral, while Bryce’s was only on one side and resolved very quickly. Bryce opened his eyes first, and was also the first to start receiving gavage feedings of Mama’s milk. When they found bacteria growing in their ventilator tubes and subsequently in their urine, Chloe’s was always more severe.

Bryce’s big challenge was low blood pressure. He was on dopamine for hypotension until he was nearly a month old; Chloe only needed the medication until she was about two weeks old.

In fact, our little princess looked like she was going to leap frog ahead of her big brother at three weeks of age, as she started gaining weight more steadily and her feedings increased faster.

Unfortunately, our daughter developed necrotizing enterocolitis (NEC) at around 3.5 weeks; tragically, a suspected bowel perforation less than a day later resulted in a massive infection and heart failure that claimed her life very abruptly on day 26, despite heroic efforts on the part of the NICU staff.

Bryce was on the ventilator for a little more than five weeks, and then on a nasal cannula for an additional nine weeks. He developed stage three aggressive posterior retinopathy of prematurity (AP-ROP), and was transferred to Children’s Hospital of Minnesota for laser surgery at 70 days of age. He recovered from the surgery well, and stayed in the hospital for another 38 days before he came home. Bryce also struggled with reflux and apnea/bradycardia spells when he started bottle/breast-feeding, and he suffers from protein-induced enterocolitis, which means that Mama is on a dairy-free/soy-free diet to this day. Bryce came home on an apnea monitor (which he is still on), but did not need oxygen or caffeine.

Bryce spent 108 days in the NICU before coming home. As for lasting effects, dad says it is a little early to say whether the issues will be mild or moderate. His growth started off slow, and he’s extremely small even for his adjusted age, but he’s been exceeding expectations for the past month. Bryce is likely hard of hearing, but he is not deaf, and part of his hearing trouble may be due to a small cleft palate which will eventually be repaired. Bryce had laser surgery for AP-ROP, and he will definitely need glasses someday, but he is not blind and we’re cautiously optimistic that he will have decent vision as he gets older. It’s too early to tell if he’ll have developmental issues, but odds are that he’ll have at least a few challenges to overcome.

Dad says that one of the hardest parts about having Bryce at home is how isolated they feel. Due to his small size and Chronic Lung Disease, which is damage to the lungs caused by the six weeks he spent on ventilators, we are constantly reminded that if Bryce gets sick, he’ll likely end up back in the hospital. This has been especially hard with all the fear surrounding this year’s cold & flu season, as dad feels like they have to keep him quarantined at home. Though he is nearly six months old, many of Bryce’s family have yet to meet him!

Bryce has his angel sister Chloe to look over him. He also has a big brother named Logan who is almost three years old. Logan was born at full term. Dad says he is a great kid and loves to help out his little brother.

If Jason had one piece of advice for a new preemie parent, it would be this: Be there for your child(ren) as much as you can. Yes, it’s scary and it’s stressful, but try to learn as much as you can about their care. The doctors and nurses at both our NICUs were fantastic, but even good people make mistakes, and you’ll notice little things about your child that the nurses might miss. Speak up if you have concerns, don’t be afraid to ask questions, and don’t back down until you’re satisfied.

I asked Jason to describe Bryce and Chloe in one word and he said this: Bryce “TENACIOUS” and Chloe “DRAMATIC”.

I have to say that I am absolutely BEYOND impressed with Jason. It is not too often that you see a dad in an online group for premature babies. This is definitely a hands on dad and it is so refreshing to see!It seems to me that Bryce and Chloe came into a wonderful family full of love and hope. I wish Bryce nothing but the best, along with his mom, dad and brother in the future.

If you would like to read more about the twins or follow the journey that lies ahead, you can go here to A TWIN STORY

November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our eighth profile is of a gorgeous little guy named Emery.

Emery was born on December 18th 2006 at 26 weeks. Mom Sarah had severe early onset pre-eclampsia. (A condition characterized by pregnancy-induced high blood pressure, protein in the urine, and swelling (edema) due to fluid retention.) His growth had stunted because he was not receiving any nutrients through the placenta.

At birth Emery weighed a mere 597 grams. Upon birth, his lungs were very stiff and could not take a single breath. He received surfactant* and was put on a ventilator to help him breathe. He stayed on the ventilator for 4 months (this is a tad long for a preemie who would generally average 4 to 8 weeks on a ventilator.)

In his early days Emery had a PDA (patent ductus arteriosus), which meant his already underdeveloped lungs were being deprived of oxygen but being filled with blood instead. He received multiple doses of a drug called indamethicin to close it and it closed after a few weeks. He actually was put on the surgical schedule to have it closed 3 times, and each time before the surgery the surgeon would order a round of the medication only to have the PDA close the day of surgery. It would open with 24 hours and this whole process would start again.

Emery had 30+ blood transfusions and also had pneumonia. He got heel sticks 4 times a day while on the vent. Multiply that by 120 days – his poor heels were in shreds and to this day he has little feeling in them.

He received four courses of dexamethasone (a corticosteroid drug used to treat inflammation) to help him off the vent. He did finally come off the vent to CPAP, where he stayed for just shy of 3 months. During this time he had an episode of crying, dropped heart rate (bradycardia) and unusually high respirations (around 120 per minute) that scared one of the nurses. As luck would have it, his ARNP (nurse practitioner) worked in the PICU before she came to the NICU and ordered a renal scan on a whim, and it turned out she was right. Emery had an extremely large kidney stone in his ureter. This is extremely odd for a baby. In fact, it happens in roughly 1:1 million babies mom was told by his neprhologist. Yes, he’s one in a million. The stone was so large that an adult couldn’t have passed it, but no one had ever done a kidney stone removal in a baby before (he weighed around 9 pounds at the time) so he had a reconstructive urological surgeon do the procedure. It took about 5 hours. The docs were pretty nervous about it because of his extensive lung problems and the fact that he would need to be re-vented after it took so long to get him off the vent, but Emery handled it very well. He still has many kidney stones that are in the kidneys and has hypertension because of it. He is monitored every 3 to 6 months and has been stable since.

Emery finally got to a point where he was stable from a respiratory standpoint but couldn’t eat so it was decided to put a G-tube in. Mom had the option of him staying in the hospital a while longer (but at this point it was close to 8 months) or sending him home with a nasogastric tube to work on eating a while longer. Mom didn’t want to put him through any more trauma so she chose the G-tube. It was the best decision for him.

Emery was in the NICU for a total of 225 days before coming home. Today, he’s nearly 3 years old and still has lingering effects of his prematurity. He’s developmentally disabled (which in layman’s terms would mean he’s borderline autistic/mentally retarded.) Those things cannot be diagnosed until he’s much older so he’s simply being monitored for it and treated with multiple therapies. Emery is considered PDD or pervasive developmental disorder. Physically mom says he does very well and can even walk up to two miles independently.

Emery still has a G-tube and hates to eat. He has a severe feeding disorder and oral aversion. The months of being ventilated damaged his throat and he does not like the sensation of swallowing. He is also a chronic vomiter due to reflux and still vomits every day. His parents have to check his blood sugars fairly regularly as well. He has an issue where if his blood sugar gets too low he’s incapable of keeping anything down and needs intravenous nutrition.

Emery does also wear oxygen still although this is not full time. He is respiratory compromised because of his BPD (bronchopulmonary dysplasia.)

Every day he makes progress though, in many areas. For him, only time will tell what’s in store for him, but he is pretty resilient and faces challenges with a smile.

If Sarah had one piece of advice for a new preemie mom it would be this: To cherish each moment you have and not wish for it to be different, no matter how hard it sounds. No matter how hard it seems, you can bond with your premature baby.

I asked Sarah to describe Emery in one word and she said “CHARISMATIC .”

If you would like to read more about Emery and follow his life journey, you can go here to Littlemanbig: A Micropreemie Adventure

*A complex substance containing phospholipids and proteins. This surfactant acts like a detergent on the inner surface of the alveoli (air cells in the lungs), reducing the incidence of collapse. However, low surfactant can lead to lung collapse and atelectasis (inability of lungs to expand). Prolonged hypoxia and hypercapnia (increased amount of carbon dioxide in the blood due to decreased lung function and vasospasm) leads to acidosis.*

November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our seventh profile is of a beautiful little girl named Elizabeth.

Elizabeth was born on December 17th 2004 at 25 weeks and 3 days. Mom Angela does not know why Elizabeth entered this world to soon, as most of us never find out. Angela said she was working night shift as a Registered Nurse and after assisting with lifting a patient she started bleeding. She did have early Braxton Hicks and back pain and these symptoms were brought to my OB’s attention but he was not concerned.

When Elizabeth was born she weighed 730 grams. Her NICU stay was rocky in the beginning. Elizabeth’s PDA (patent ductus arteriosus) did not close with the standard medication and the wait for surgical closure was long. It was awful because she was having great difficulty being ventilated and was becoming septic and running out of reserve.

For a 25 weeker Elizabeth had a fairly standard NICU course. She suffered life threatening reflux and her heart rate would drop with each feed. She had extensive BPD (bronchopulmonary dysplasia) and was difficult to get off ventilator support. Once Elizabeth became more stable things became more routine as she grew. Angela would go up to the NICU everyday for the day. She would sing to her, read to her and when she was stable they would have kangaroo time where she was tucked in my shirt skin to skin.

“I savoured every second cuddling with her”

In the evening her Dad would come and bath her and get her ready for bed.

“We were very blessed to be in an amazing NICU and I feel very strongly that without the dedicated knowledgeable staff Elizabeth would not have done as well as she has”.

After three and a half months, Elizabeth was able to go home. The most difficult time was 1-2 weeks before she came home because mom and dad so desperately wanted her to be home with them.

Elizabeth is definitely not unscathed by her prematurity. She was diagnosed with a hearing impairment at 4 months old and her reflux continued at home limiting her intake. She vomited constantly and this caused her to become aversive to eating. Elizabeth was on oxygen for a while at home due to her BPD and now continues to be prone to pneumonia and respiratory illnesses.

Elizabeth has Cerebral Palsy (an umbrella term encompassing a group of non-progressive, non-contagious conditions, caused by brain damage before birth or during infancy, characterized by impairment of muscular coordination.) She can walk independently but despite aggressive physiotherapy her gross motor skills are in the 17 month range. Her CP also affects her speech and fine motor skills. Elizabeth is an extremely smart little girl but issues with attention and learning are becoming more apparent as she is being challenged academically.

Elizabeth is an only child. Angela says they have put off having another child until Elizabeth is more independent. Currently Elizabeth sees many medical specialists and therapists to help her succeed and develop. Having another child at the present would take away from the time that Elizabeth needs from her parents. They are also trying to prepare that if they did have another preemie they would be able to devote as much attention to him/her as they have done for Elizabeth.

If Angela had some advice for a new preemie mom it would be this: PLAY with your child. Things can be very overwhelming with so many professionals telling how you should teach, hold and talk to your baby, you spend so much time stimulating your child and fretting that you haven’t done enough that you begin to doubt your ability to parent. Structured playtime is as just as important as teaching your child to sit and crawl and it is a great time to relax and have fun together.

I asked Angela to describe Elizabeth in one word and she said “DETERMINED.”

Angela is a personal friend of mine, and I can definitely agree that Elizabeth is a determined young girl. She is bright, beautiful and an inspiration!

If you would like to read more about Elizabeth you can go here to ELIZABETH ANN

Other Amazing Preemies:

• Preemie Profile: 26 Week Twins Brian & Rylan
• Preemie Profile: 25 Weeker Brianna Rose
• Preemie Profile: 26 Weeker Gavin

November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our fifth profile is of a sweet little girl named Brianna Rose.

Brianna was born on February 12th 2009 at 25 weeks and 1 day. Mom Melissa had severe preeclampsia that was rapidly progressing to HELLP syndrome. (Pre-eclampsia is a condition characterized by pregnancy-induced high blood pressure, protein in the urine, and swelling (edema) due to fluid retention. HELLP syndrome is a complication of severe preeclampsia.) It was a very scary situation and mom and dad were terrified that they would lose baby Brianna.

When Brianna was born she weighed only 586 grams. Brianna was always a fighter. Every nurse who worked with her described her as “feisty” and they believed that her feistiness helped keep her going strong.

During her NICU stay Brianna overcame numerous obstacles. She had PDA(Patent Ductus Arteriosus) ligation at 12 days, multiple blood transfusions, sepsis, infections, anemia, reflux, RDS (respiratory distress syndrome), BPD (brochopulmonary dysplasia) and ROP (Retinopathy of prematurity) stage 3, at its worst-which is now resolved.

Brianna seldom had bradycardia (low heart rate) but had a really difficult time keeping her oxygen sats up(apnea of prematurity). This was the last obstacle that Brianna had to overcome as she could not even pass the car seat test because her oxygen levels kept dropping. The doctors then decided to put her on caffeine which helped resolved her oxygen issues.

After 117 days in the NICU Brianna was able to go home. As for any lasting effects from her prematurity, mom Melissa thinks it just may be too early to tell. Melissa says that Brianna was fortunate compared to a lot of the babies she has read about. She escaped her NICU experience seemingly unscathed. Brianna still has anemia, reflux and BPD. She takes vitamins, medications and inhalers for these conditions.
Brianna is also on an apnea monitor at night but that is hopefully coming to an end later this month.

Developmentally, she is coming along well. Brianna is functioning right where she should be based on her adjusted age. As for size, she is rather small. She does not suffer from any feeding disorders but can only tolerate three ounces of milk/formula at a time. She is just now starting to try spoon feeding and she has been able to do that once successfully so far. Overall she is a very healthy and happy little girl, and she is the most amazing and magnificent child Melissa could imagine!

Melissa found the NICU experience very stressful. She says that you cannot truly understand that roller coaster ride unless you have been through it. They loved the hospital where they were and found the nurses very helpful and supportive. But despite that it was still very stressful and at times a traumatic experience. Even now, 9 months later, Melissa sometimes struggles. As most moms of preemies realize, the NICU experience doesn’t end when you walk out of the hospital with your baby. Of course they still have to be very cautious with Brianna. They can’t just take her out and about. She can’t go to the grocery store or department stores , to restaurants or even to work where Melissa could show her off. She has had exposure to extended family, but Brianna’s parents try to keep that to a minimum. The risk of her getting sick is just too high, given that her body didn’t have the same chance as full-term babies to fully develop an immune system.

If Melissa had one piece of advice for a new preemie mom it would be this: Take things one day at a time and celebrate all of the small victories.

I asked Melissa to describe Brianna in one word and she said “AMAZING”.

Brianna sure is an amazing child! And might I add cute as a button!!!

If you would like to read about Brianna, you visit her here at Brianna Rose Ganey

November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our fourth profile is of Gavin Paquette.

Gavin was born on December 22nd 2007 at 26 weeks 4 days, however the doctor said he was more the size of a baby born at 25 weeks and 3 days. They thought that possibly mom Jennifer was confused about the conception date however she wasn’t because she had IUI (Intrauterine insemination) to conceive.

Jennifer had HELLP syndrome (a life-threatening obstetric complication usually considered to be a variant of pre-eclampsia.) Gavin weighed a mere 640 grams when he was born.

During Gavin’s NICU stay he was intubated shortly after birth because the doctors said he was able to cry OR breathe, but not both at the same time. He was on the ventilator for 5 weeks when they were able (after a course of steroids) to wean him to CPAP (continuous positive airway pressure.) Gavin was on CPAP for 3-4 weeks, then they were able to wean him to high-flow nasal cannula oxygen. (He came home on oxygen and was on it until he was over a year old.)

Gavin was OG (oral-gastric) tube fed for several weeks after starting on TPN for a few days after he was born. They wouldn’t feed him for the first few days because he hadn’t passed his meconium plug. They had to keep giving him enemas daily to pass it. Gavin started being fed by NG (nasogastric) tube after a while.

About a week after he was born he ended up with pneumonia, and shortly thereafter he developed MRSA (Methicillin-resistant Staphylococcus aureus is a bacterium responsible for difficult-to-treat infections) in one of his eyes. Parents were unable to touch his skin with bare hands until he reached 1000 grams, but he had MRSA at that time, so they couldn’t touch him until after that was cleared up. Because of his fragile state and being on the ventilator, they were unable to hold him until he was 5 weeks old, and that was only with gloves and gowns on due to the fact that he still had the MRSA.

They started trying to bottle feed Gavin at 34 weeks. Breastfeeding was given a try in the hospital after working on bottle feeding, but Gavin never took to it. Most of his NICU stay was spent watching him desat (several hundred times a day at first!), and then trying to get him to gain weight so his lungs would get better. He retained fluid, so they started him on diuretics which he continued for about 6 months.

Gavin spent a total of 103 days in the NICU before coming home. As far as effects from his prematurity, he has BPD (Bronchopulmonary Dysplasia-a chronic lung disorder that is most common among children who were born prematurely, with low birthweights, and who received prolonged mechanical ventilation.) A neurologist told Jennifer that all preemies have some degree of brain damage. She does not know yet if that’s true. Gavin seems to be mostly caught up at least to his adjusted age, and his physical health (except for his lungs, which are getting better all the time.)

Gavin did have reflux while in the NICU and when he came home, but there was no luck with treating it with Prevacid or Zantac. They decided to just not treat it since it wasn’t that bad. He has been diagnosed with failure to thrive (a condition in which a child loses or fails to gain weight and grows at a slower rate than expected) since he wouldn’t drink more than a few ounces at a time until just recently. Gavin is finally starting to catch up on weight though.

If Jennifer had one piece of advice for a new preemie mom it would be this: Join a support group and get as much information and help as you can!

I asked Jennifer to describe Gavin in one word and she said “FIGHTER”.

I agree! It is not easy for any baby born this early to pull through the NICU without a fight!

Each year over 500,000 babies are born prematurely(before 37 weeks). Of those babies 100,00 will have long term consequences and 5,000 won’t make it.

November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our first story is a pair of super twins, who arrived under some very unique circumstances.

Children’s name: Twins Peyton Ruby Mae and Marc Anthony
Date of birth: December 25th 2007
How far along were you in your pregnancy? 26.5 weeks
Do you know why your twins were born premature? PROM (premature rupture of membranes)
What did your they weigh at birth? Peyton was 980 grams and Marc was 1000 grams
Tell me a little bit about their NICU stay.

Peyton was twin A, her amniotic sac was thought to be ruptured at 22 weeks gestation. She was a natural birth. with apgar scores of 0/2/2 at birth. She was given surfactant and chest compressions. Peyton was vented for 5 weeks and was given steroid courses to get her off the vent. She was on cpap until she was 9.5 weeks. She left the NICU on a cannula. PDA was closed with medication. She had no brain bleeds and no ROP. Peyton had severe reflux and co-ordination desats and severe bradys. Peyton went home on an apnea monitor, oxygen, and caffeine.

Marc was an emergency c-section. His apgars were 2/2/5. He was given surfactant upon birth. He was on an oscillator vent for 2 weeks, traditional vent for 3 weeks, bi-pap/cpap for 4.5 weeks and cannula for 2 weeks. He had multiple pnu molthorx’s (holes in lungs) requiring three chest tubes. He also had a pembroke drain to release trapped air from his belly. Marc had hyperbilirubin due to very prolonged TPN feeds. He had excessive bile in his gut thought to be an infection and a grade 1 bleed on the right side and a large grade 4 bleed on the left. Even though he had several spinal taps to relieve pressure caused by the bleed, he has not required a shunt thus far. Marcs PDA was controlled (not closed) by medication. He had stage 1 ROP that healed with time. Marc went home with an apnea monitor and on caffeine.

How long were they in the NICU?

Peyton was 127 days and Marc was 97 days.

Are there any lasting effects from their prematurity?

Peyton is developmentally delayed in all areas with the exception of gross motor.
Marc is delayed in all areas. He has mild cerebral palsy and MRI shows PVL. He has a trapped cyst in his brain. At 16 months old he had surgery to close his PDA.

Do you have any other children? Were they premature?

No other children

If you had one piece of advice for a new preemie mom, what would it be?

I would tell other moms that YOU as the mom are your childs best and sometimes only advocate. Never stop fighting for your child and for what he or she needs.

Describe your children in one word: Amazing!

We Agree!