Growing Your Baby - Parenthood from Pregnancy to Pre-school » Premature Baby

Born Too Early: Meet 25 Weeker Emily!

Shannon — Sun, 14 Mar 2010 20:27:57 +0000

Emily Kaye Medema was born on January 11th 2005 at only 25 weeks weighing a mere 327 grams! At the time of birth the reason for her early arrival was not known. This is the case for most of us preemie moms.

Shortly after birth Emily was sent straight to the NICU and was not allowed to come out of her isolette for a week because of how of her size. When the nurse was finally able to take her out to be weighed she was so small at 11.7 ounces and 10 inches long they gave her parents a 5% chance of survival.

Although Emily arrived at 25 weeks she was more the size of a 22 week old baby. Her parents and doctors believe her feistyness probably contributed to her being able to survive being so tiny.

At a month old Emily developed Necrotizing Enterocolitis (NEC) – A serious condition that involves inflammation, infection, and destruction of the bowel or parts of the bowel which can, in some cases, lead to death. This condition primarily affects premature infants. She was then transported to the area children’s hospital to have surgery done.

We got there to find the doctors fighting amongst themselves as they did not want to do the surgery because her chances of surviving the surgery were only at 3%. I looked at them and said “if you don’t do the surgery her chances are 0% I would take that three percent over zero any day.”

By the time doctors got to the infection it was so bad her intestine had liquefied. When the surgery was finally complete they were just flabbergasted because this little 11.7 ounces miracle made it through with flying colors and with no complications at all. Today, she has a colostomy-a surgical operation that creates an opening from the colon to the surface of the body to function as an anus.

Emily spent about a month at the Children’s hospital and then was transferred back to the hospital she was born at where she stayed until she was sent back once again to have more surgery. This time she had two hernias that needed to be taken care of and needed the resection of her intestine done.

The one thing Emily did not have, and everyone was truly amazed with, was a brain bleed, which they were thankful for!

She is truly a very Amazing little girl. No matter what was thrown in her path she fought it with all she had.

After spending a total of 137 days in the NICU, Emily was released home on oxygen and a heart monitor. She is still on Oxygen 24 hours a day due to her Chronic Lung Disease.

As for lasting effects, Emily had ROP “Retinopathy of prematurity”-an abnormal growth of blood vessels in the developing eye that can lead to problems with vision or a loss of vision. Amazingly, it has actually reversed on its own, however, she is showing signs of nearsightedness.

Because she on a ventilator for so long after birth, Emily has Chronic Lung Disease(CLD), inflammation and scarring in the lungs. Doctors had hoped she would grow out of this by the time she was 6 months, but she is now 5 years old and still in need of help breathing. As she gets bigger her lungs will grow new tissue, which should help them get stronger. Also associated with her CLD is Pulmonary Hypertension- Abnormally high blood pressure in the arteries of the lungs. For Emily this will also improve as her lungs grow stronger.

Additionally, Emily was also born with an atrial septal defect which is an abnormal opening between the left and right atria of the heart. She still has this heart defect and they cannot close it until her other medical issues associated with her CLD and PH get better.

At 5 years old, this amazing little girl weighs only 26.5lbs and is considered to have a growth failure called Failure to Thrive (FTT). To help with this she has a g-tube (a feeding tube) to give her extra nutrition. The doctors have said she may be small for the rest of her life.

As well as having Emily in 05′, mom had a stillbirth back in 2002 and another micropreemie in 2008 who will be featured this week as well!

I asked for one piece of advice and this is what she said:

Don’t ever be afraid to ask all the questions in the world . If you don’t understand what they are telling you tell them to explain in terms you can understand. Doctors tend to forget we are not medical personal and we don’t understand all their medical language.

I also asked mom to describe Emily in one word and she said “MIRACLE” and we agree! – Shannon, Staff Writer

Other Amazing Babies:

Tiny Baby Survives After Arriving Weighing Just 9 Ounces

Lisa — Fri, 05 Mar 2010 15:18:34 +0000

German doctors have revealed photographs of the smallest premature baby boy to have survived against incredible odds after being born at 25 weeks weighing just over half a pound.

The baby, only known as “Tom Thumb” weighed a fraction over 9.7 ounces (275 grams) when he was born by Caesarean section 15 weeks prematurely at the University of Medicine at Göttingen in western Germany in June 2009.

Like most babies born at this gestation, he need 24 hours monitoring and was hooked up to feeding tubes, breathing tubes, a heart monitor, a catheter and a plethora of electronic devices to monitor every vital sign as he faced risks of cerebral hemorrhage or organ failure.

In December, the baby was finally pronounced “stable” after achieving a weight of 8.2lbs – considered an average birth weight in Germany.

Now, nine months after his birth, doctors have allowed the unnamed boy’s parents to take him home, after ruling that he is strong enough to survive outside of the hospital

Even though officials from the hospital said that, they have checked all available records of premature births worldwide, they were unable to find a viable birth of a boy at a lower weight, we covered a tiny baby last year who weighing 259gms.

Before this, Medical professionals believed that survival can not be achieved at birth weights below 350 grams (0.77 pounds)

Weighing just 1 ounce more, Amillia Taylor is still believed to have been the youngest surviving micro-preemie arriving at 21 weeks 6 days weighing 10ozs in Miami Florida.

Other Amazing Preemies:

SOURCE

Born Too Early: Meet 24 Weeker Catherine!

Shannon — Sat, 27 Feb 2010 14:42:58 +0000

Starting back in November for the March of Dimes Prematurity Awareness Month some parents who had babies prematurely offered to tell their stories to create awareness about his important cause. Because there are still so many stories to tell, we have decided to continue introducing you to these amazing children. Children with many ranges of issues from their premature birth and sometimes including the sad stories where the child did not survive. Remember, prematurity can happen to anyone, anytime.

To kick this off, our next profile is that of a beautiful little girl named Catherine. Catherine was born on August 10th 2008 at 24 weeks and 2 days weighing a mere 480 grams.

Mom Deb is one of the few who ever really find out why they had their babies early. She had pre-eclampsia. (a condition characterized by pregnancy-induced high blood pressure, protein in the urine, and swelling (edema) due to fluid retention.) At her 24-week checkup, her OB saw that her blood pressure was sky high and Deb also had protein in her urine. Deb was then sent to labor and delivery right away, where additional tests confirmed preeclampsia. She was hospitalized immediately. Catherine was born four short days later.

Catherine was in a very high-tech incubator for about 12 weeks after she was born. She was intubated (on a respirator) for 8 weeks, then on the next step of CPAP (continuous positive airway pressure) for about a week before just switching to oxygen.

The first time I saw her, I didn’t notice anything else around her, but as the days went by I became acutely aware of all the machinery and monitors she was hooked up to, and I learned what each one meant and how to read it. I became very well-versed in medical terminology as far as it related to my daughter. Her room had 9 other beds in it.

The NICU had several rooms, depending on level of care needed for the babies. Catherine was in the highest level, where most NICU babies go when they are first born. Mom Deb was with her every day, spending about 6-8 hours at the hospital. The nurses who Deb says were fabulous, wanted her as involved as much as a mom can be in a hospital setting. They did hands on assessments every three to four hours, and during that time Deb was the one who would take her temperature and change her diaper.

Deb got to hold Catherine for the first time at 18 days old. After that it was about once a week. It is very difficult to arrange holding a baby while they are intubated on a ventilator. A respiratory therapist is involved to make sure the tube doesn’t move- all very stressful!

Once Catherine was just on oxygen (about 9 weeks after birth), mom was able to hold Catherine more frequently. Also exciting, was that once she was on oxygen she could start wearing clothes. At this time even the preemie outfits were falling off of her, but it was something to help Deb gain a sense of normalcy.

Catherine was weighed every evening and at that time she would change her clothes for the day. Mom did help with her first bath, but didn’t get to bathe her much during her entire stay.

On December 23, one month after her due date, Deb was able to take Catherine home.

Santa must have thought I was a good girl that year, because I couldn’t have asked for a better present!

Catherine spent a total of 136 days in the NICU.

On the chart the nurses listed “DOL” (days of life). For some reason that was startling to see that….I guess with a full-term baby, you go home and after a week or so you just switch to weeks/months. “Days of Life” doesn’t come up with a full term baby. With micropreemies, even after the hospital we have two ages we refer to: gestational vs. actual age, at least until they are 2 years old.

As for lasting effects from prematurity, Deb says that Catherine has issues but does not know how long lasting they will be.

Like most mircopreemies, Catherine has chronic lung disease. Basically, this means her lungs sound fine most of the time but because they were not fully developed, she will have difficulty recovering from the flu, colds, etc.. If she catches the flu or RSV, it is likely she will have to be hospitalized and possibly put on a respirator if her lungs aren’t strong enough. It’s something I won’t know until she gets sick. Then we will know just how strong her lungs really are.

Catherine has a cyst in her larynx as a result of being intubated for 8 weeks (the irritation caused the cyst). Fortunately it does not affect her breathing or eating functionality, but it is pressing on her vocal chords. Any sound/laugh she makes sounds very raspy, almost like she has a cough. Her excited sound is similar to the sound she makes right before she cries… so you would have to look at her face to see what emotion she is feeling. We had this cyst removed last summer, but it grew back (always a possibility). Right now the ENT is monitoring it, and we hope to wait until Spring to have surgery again. (Again, because of her lung disease nobody wants her near a hospital for fear of contracting H1N1 or another flu).

Catherine came home on oxygen 24/7. In July she switched to oxygen just at night.

Catherine is 15 months actual, and is 11 1/2 months adjusted (which is how we measure micropreemies at first). She only weighs 14 1/2 lbs and wears 6-month (and some 9-month) clothes. She certainly doesn’t look like she’s a one-year old! She used to have reflux but that was managed with medication and seems to be a non-issue now. She does however have some eating issues. She does not have a feeding tube and for now the Ped and GI have backed off on that option.

Catherine’s motor skills and growth milestones are extremely delayed. Her fine motor skills are that of a 6-7 month old. Her gross motor skills are more like an 8-month old. She has no teeth yet, and she hasn’t started talking or walking. She is doing a commando-style crawl, and just recently she got up on her knees for the first time. In November 2009 she sat up by herself twice.

Catherine sees an Occupational Therapist two times a week, a Physical Therapist once a week and an Infant Developmental Specialist once a week. She does make progress so all the experts expect her to catch up, but she is on her own timeline.

I suspect I really won’t know about any lasting effects for a few years yet. For example, learning disabilities and autism-like symptoms are very common in micropreemies, but it is too early for such a diagnosis.

If Deb had one piece of advice for a new preemie parent, it would be this:

I actually gave this advice to a new Dad who had just seen his daughter for the first time (his wife was still in recovery). They didn’t know if their daughter was going to pull through or not. First of all, congratulations (many people are afraid to say that when your baby is in the NICU). Enjoy every moment you share with her. Celebrate any little bit of progress she makes. Yes it is scary but keep in mind she is a lot stronger than she looks. Try to look at her, not all the tubes and wires hooked up to her. She’ll have to stay here for a while but you are her parents and she already knows that. Get as involved with her care as you can. She is your baby, again celebrate everything about her! Oh, and don’t be afraid to ask questions, don’t be shy about her care. (Their daughter pulled through and was discharged shortly after Catherine. After that first night, I never saw the dad without a smile on his face!)

I asked Deb to describe Catherine in one word and she said this:

Heroic. Miracle. Amazing. Take your pick!

Don’t worry Deb, we know how hard it is to describe your child who has overcome all odds in just ONE word! Catherine is definitely heroic, amazing and most of all a miracle!

Study: Aspirin During Pregnancy May Help Preemies

Atula — Fri, 01 Jan 2010 18:28:44 +0000

For mothers who are at risk of of delivering prematurely, this is a news worth following. French researchers have found that those mothers who have chances of a premature birth and are given low-dose aspirin during pregnancy have kids with slightly fewer behavioural problems.

The study was done on 656 children born before 33 weeks to 584 pregnant women who had a history of placental vascular disease, fetal growth restriction, chronic hypertension, and renal or autoimmune diseases. Scientists found that 21 percent of moms who took low-dose aspirin during pregnancy were slightly less likely to have children(at the age of 5) with behavioral difficulties or hyperactivity.

Though the results were not statistically significant, they were important to reassure physician and patients that giving low-dose aspirin is not associated with a higher risk of problems in the baby.

Many physicians prescribe aspirin in low dosage to mothers who are susceptible to complications like fetal growth restriction or pre-eclempsia. Aspirin is an anti-inflammatory drug and also interferes with blood clotting functions. The study found that these attributes of the drug do not increase the risk of brain bleeds in already fragile premature infants. In addition, the babies may also face no increased risk of death, cerebral lesions or cerebral palsy.

“Anything you can do to help premature babies is worth pursuing because, for many, it’s a desperate situation,” said Dr. Michael Katz, senior vice president for research and global programs at the March of Dimes. Also noting that ‘the study is intriguing, but the findings are too preliminary to be of much help to women or their physicians because women in the study were also given other drugs, including corticosteroids, and it’s unknown how much that affected the outcomes’.

As the exact role of aspirin in preventing problems during premature pregnancy is still not known, many doctors are still speculative of the test results. Yet, this research is a positive step ahead and a huge reassurance to parents who tackle the delicate situation of premature pregnancy and taking care of babies with higher risk of neurological problems, learning disabilities, cerebral palsy, and hearing and vision problems.

If further research finds the results accurate, aspirin can become a very inexpensive way of tackling with issues of premature baby births.

- Atula, Staff Writer

SOURCE

Michelle Duggar Has Baby 19: Emergency C-Section To Premature Girl Josie

Lisa — Fri, 11 Dec 2009 15:33:08 +0000

TMZ is reporting that Michelle Duggar gave birth to baby #19 last night after she was rushed to the operating room for an emergency.

A rep from TLC who told them,

“Michelle, who has been in the hospital recovering from a gallstone, was taken to the OR for an emergency c-section.”

At 6:27 PM last night, Michelle and Jim Bob welcomed their new daughter, Josie Brooklyn. who weighed in at 1lb., 6 oz.

Michelle is now resting comfortably and the baby is “stable” — although she’s in the neonatal intensive-care unit at the University of Arkansas for Medical Sciences.

The rep added,

“The most important thing right now is for Mom and baby Josie to get as much rest as possible. The family is grateful for all the prayers and well wishes during their recovery.”

Our thoughts and prayers go out to the Duggars. My son was born weighing just 1 ounce more than Josie 4 years ago. It was a very scary time for us. They will need lots of positive support.

Related Articles:

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Preemie Profile: 27 Weekers Matthew & Andrew

Shannon — Mon, 30 Nov 2009 15:54:50 +0000

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 twentieth profile is that of Matthew and Andrew.

Matthew and Andrew were born on June 24th 2007 at 27 weeks 1 day.

On Thursday June 21st 2007, mom Karen went in for a routine ultrasound. During the ultrasound she found out that although there were no previous signs of Twin to Twin Transfusion Syndrome*, she was currently in Stage 3 TTTS with the identical twin boys. Karen and her husband quickly made plans to travel to Florida to have fetal laser surgery and laser the blood vessel connections between the boys. They never made it to Florida. On Sunday June 24th she started bleeding and went to the ER. The initial ultrasound in the ER showed that they had lost their son, Andrew. Matthew was in severe distress. Karen had an emergency C-section and at 8:38am the boys were born.

Upon birth, Matthew weighed in at 1lb 14oz. Karen says that Matthew’s journey in the NICU was the roller coaster that is always talked about. It was constantly a few good days followed by several bad days. Some of the bad days were terrible. At one point he had an infection and subsequent capillary leak that almost took his life. In total, he had four major episodes of sepsis, he was on a ventilator for 3 months (including an oscillator), had surgical NEC (acute inflammatory disease occurring in the intestines) with a bowel resection, IVH (right grade III and left grade II), PVL (damage to the white matter of the brain near the ventricles), BPD (bronchopulmonary dysplasia), feeding difficulties, and severe reflux.

After three months in one NICU, Matthew was transferred to the local Children’s hospital for a bowel resection. He remained in this NICU for an additional six weeks. He was discharged to six specialty physicians. He came home on oxygen, continuous NG tube feeds and an apnea monitor. Matthew was on nine different medications.

Mom and dad thought they had made it through the hard part, but little did they know it was only the beginning of the journey.

Matthew was in the NICU for a total of 135 days before coming home. The first two years of his life were pretty rough. He remained on O2 for an additional 6 months after his discharge. The spring after his discharge mom had enough of the NG tube and then had a G-Tube put in. Doctor appointments were frequent. As were the therapy appointments. Matthew had PT twice a week for almost 2 years. OT once a week for almost 2 years. Feeding therapy with a Speech Therapist between once and twice a week. Speech therapy is ongoing. He had strabismus and eye surgery to correct it around age 2.

As with most preemies, his contact with the outside world was limited for the first 18-24 months. He had numerous ear infections and subsequent surgery to insert ear tubes. The reflux he experienced was like nothing mom and dad had ever seen. Along with the projectile vomiting numerous times a day, the pain he experienced with the reflux was severe.

Karent says that their journey has gotten easier. The winding path they have been on has seen many of Matthews issues resolve themselves. Feeding is still the biggest challenge. Matthew never took a bottle. He never learned to drink from a sippy cup. At 17 months, Matthew learned to drink from a straw. He now is able to drink liquid from straw cups, but will only drink water or apple juice in very small amounts. If we get him to take 5 ounces in a day it is worth celebrating. At 18 months, they would be excited if he ate five bites of pureed baby food, that was considered a successful meal.

Matthew is almost 2 ½ now. They have tried four therapists long-term over the last two and half years. Two others were fired after the first couple of visits. They have been seeing the current therapist since July. She has finally gotten Matthew to learn how to chew and swallow “table” foods. His foods of choice are very limited still: chips, ham, watermelon, grapes, bacon, pizza (his personal favorite), French fries, and any hard crunchy foods. However they consider this a tremendous success. A lot of the credit goes to the new therapist. She is truly an angel.

Matthew is now 29 months. He weighs approximately 24 lbs. He is handsome and happy. He talks like crazy, speaking in sentences. His gross motor skills are where you would expect for a child his age. He is behind in the area of fine motor skills, but not enough that most people would even notice. Matthew runs, laughs, and plays. He is a trouble maker and calls himself “tricky” when he does something “bad.” He is a true joy.

Matthew has an older sister (step sister) Megan who is 20 years old, born full term. There is also big sister Lauren who is 12 years old. And then little Sydney who is four years old. She was three weeks early (after pre-eclampsia, bedrest, several hospitalizations, and a nightmare of a pregnancy.)

If Karen had one piece of advice for a new preemie mom it would be this: The preemie journey, in my opinion is too complicated for one piece of advice. Here is what I found most important: have faith, take one day at a time, ask for and accept as much help as you can get, and most importantly pray.

I asked Karen to describe Matthew in one word and she said “BEAUTIFUL.”

Matthew truly is a beautiful child!!!!

*Twin-to-twin syndrome is a condition of the placenta that develops only with identical twins that share a placenta. Blood vessels connect within the placenta and divert blood from one fetus to the other. It occurs in about 15 percent of twins with a shared placenta.

Preemie Profile: 23 Week Twins Olivia & Logan

Shannon — Thu, 19 Nov 2009 04:47:01 +0000

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 fourteenth profile is of twins Olivia Paige and Logan William.

Olivia and Logan were born on August 27th 2007 at only 23 weeks 1 day.

Mom Jodi said that the doctors best guess about why she gave birth so early was because of an incompetent cervix (A condition in which the cervix opens prematurely without contractions.)

At birth Olivia weighed 1lb 1.5oz and Logan was 1lb 1.75oz. Olivia’s NICU stay was as smooth as it could possibly be for a 23 weeker. She had no brain bleeds, no ROP surgery (Retinopathy of Prematurity) as she only got a stage two. She had no issues with bowels, intestines or brain damage. Mom said it was just a miracle.

Logan, however, did not get to go home to his family. He passed away after 1 month, 1 day. Jodi says that people don’t realize how the death of your child will affect you for the rest of your life.

It was tough to plan my child’s funeral, while still not knowing if I would get to take my other child home.

Logan had a grade 2 brain bleed, but no sign of PVL (damage to the white matter of the brain near the ventricles.) Doctors could never get his blood pressure stabilized and his kidneys had trouble functioning and he stopped urinating multiple times. In the end, his heart gave out and after resuscitating him multiple times, multiple shots of epinephrine to the heart, he passed away.

After 105 days in the NICU, Olivia came home. As for lasting effects from her prematurity, Olivia’s skin is severely scarred because it was so underdeveloped at birth. She is about 6 months behind developmentally and has some sensory disorders. She has had one strabismus (eye muscle) surgery and will probably need another one. She wears glasses and has a lot of problems gaining weight. She is 2 years old and 20 lbs.

Jodi and her husband do not have any other children. They tried for 3 years to become pregnant.

We wanted our babies more than anything and I did nothing in my pregnancy that would cause prematurity. It can truly happen to anyone.

If Jodi had one piece of advice for a new preemie mom it would be this: Take care of yourself. I was diagnosed with severe adrenal fatigue about a year later. It is such a stressful time that you run on adrenaline to get you through. Eventually, you can completely run out. Pumping breast milk is the one thing that I felt I could do for my babies when all other new mother experiences were taken away. I never got to hold Logan until after he passed away. I couldn’t hold Olivia until she was over a month old. Providing breast milk was something special I could do for her and Logan.

I asked Jodi to describe her children in one word and she said “MIRACLES.”

These two are definitely miracles in my eyes as well. If you would like to read more about this amazing family and follow their journey, you can go here to Olivia & Logan

Preemie Profile: 24 Week Twins Charlton & Savannah

Shannon — Tue, 17 Nov 2009 05:14:55 +0000

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: 29 Weeker Charlotte

Shannon — Sat, 14 Nov 2009 16:04:18 +0000

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

Preemie Profile: 25 Weeker Maggie Grace

Shannon — Fri, 13 Nov 2009 07:07:14 +0000

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!

Preemie Profile: 26 Weeker Emery

Shannon — Tue, 10 Nov 2009 15:29:48 +0000

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.*

World’s Smallest Mother Set To Welcome Third Baby

Lisa — Tue, 10 Nov 2009 00:19:23 +0000

Despite warnings she is risking her life, Stacey Herald, the world’s smallest mother, is set to welcome her third baby.

Measuring just 2ft 4ins, Mrs. Herald has already defied doctors orders and gone on to deliver to have two healthy baby girls.

The 35-year-old from Dry Ridge, Kentucky, USA, suffers from Osteogenesis Imperfecta, which causes brittle bones and underdeveloped lungs, and means she failed to grow.

Now the determined mom, who uses a wheelchair, and her husband Will, who is 5ft 9ins, are awaiting the birth of their third child, due in the next four weeks.

Even thought she cannot hold her daughter because her belly gets in the way, and she admits being pregnant is “uncomfortable”, the couple says they want more children.

By the time the new addition, a boy, is one he will already tower over his mum.

Stacey and her husband met in 2000 while working for a supermarket in their home town and were desperate for a family after marrying in 2004.

But doctors warned them that a baby would grow so large inside her tiny body it would eventually crush her organs.

“It broke my heart that I couldn’t have kids,” she said.

“All my life my parents had told me that I could do anything. Then there were these doctors telling me that we couldn’t be a complete family. It really hurt.”

Eight months after their marriage, the couple was thrilled to discover they were expecting and decided to go ahead even though family and doctors begged them to reconsider.

After 28 weeks, doctors performed a cesarean section and daughter Kateri was born, weighing just 2lbs and 1oz in 2006.

She grew well but there was heartbreak for the family when they discovered Kateri had inherited Mrs Herald’s condition and would also never grow to a normal height.
Doctors tried to let the second baby stay in Mrs Herald’s body for as long as possible, letting her pregnancy go to 34 weeks before taking her into theatre.

Daughter Makaya who, at 18 inches was more than half her mum’s body length when she was born, weighed 4lbs and 7oz.

Now both girls are bigger than their mother, who is now 30 weeks pregnant with her first boy.

She said: “It’s getting tougher and tougher to move.

“At the moment because I’m getting really big again I can’t hold my youngest daughter because my belly gets in the way and I can’t get my arms around her.”

Mrs Herald added: “All my babies are miracles, but we haven’t thought about if we’re going to have some more, as they’re a real handful right now.

“We didn’t plan to have more than two kids, we just think that they’re a great gift to the world, and when I look at them I see Will and I feel so full of love, it’s tough not to want more.”

I hope that after the baby arrives, this couple just enjoys the three miracles they have. It would be foolish for them to keep testing the laws of nature.

SOURCE

Preemie Profile: 25 Weeker Elizabeth Ann

Shannon — Mon, 09 Nov 2009 06:01:03 +0000

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: 25 Weeker Brianna Rose

Shannon — Fri, 06 Nov 2009 20:17:06 +0000

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

Preemie Profile: 26 Weeker Gavin

Shannon — Fri, 06 Nov 2009 01:36:19 +0000

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!