Helaina’s 4 and a half now. She’s happy, intelligent, kind, absolutely gorgeous, and has the best immune system I have ever seen. She is almost never sick! While her 3 brothers catch colds & flus continually, she’s rarely effected. I considered us very lucky. However, she does have health problems, and I’m now told they may be a result of her being born premature.

I can not stress the importance of a good pediatrician!!! Helaina has suffered nosebleeds for the last 2 years, and has very bad teeth. Both things our pediatrician explained away as nothing. In the last month with our new pediatrician, we’ve discovered that she has almost no sight in her left eye, which no one has ever caught, and may be a result of prematurity. She has been referred to 3 different specialists for further testing and treatment for her continual nosebleeds, vision problems, and 10 cavities. Last year, I had her in for 7 doctors visits concerning the nosebleeds and teeth and was told the nosebleeds were typical and her teeth were soft baby teeth that would fall out. Two visits to the ER yielded no results as well. I’m grateful for our wonderful new doctor. I tell my daughter’s story because the health problems don’t necessarily end when you leave the NICU. It’s easy to believe the pediatrician when they say nothing’s wrong, but don’t ignore that nagging feeling you have that maybe it’s not.

As time went by, other deformities became known – the hand deformity, narrow esophagus and air pipe, two ribs less than normal, vison impairment, acid reflux, paralyzed vocal cords, a “bridge” connecting her esophagus and wind pipe (reason for not breathing well), and a heart murmur. All of the above listed was diagnosed into an extremely rare syndrome called CHARGE Syndrome. I was devastated. They told me that it was severe and she may not live long. The “Severe” part of this syndrome was that it caused my daughter to have a low immune system, so she was unable to fight infections/bacteria well. I never called her by her name, i always called her Princess. The nurses said i should have named her that.

At the time my oldest child, a son, was 5 yrs old. Everyday for 2 1/2 months i took the 45min drive into Boston and stayed with my princess for hours, never leaving her side. I tried to make every moment count and be special. I stared into her eyes so that I would never forget her look, and so that she could always know that I was there. I used to comb her hair everyday and dress her up as much as I could.

Due to her acid reflux and inability to swallow her secretions properly, she had a feeding tube. She was soo delicate, and beautiful. I would dress her up in yellow a lot because the doctors and nurses said she looked so beautiful in that color and it made her glow. It was her color, they said. I researched and researched any chance I got so that I could learn about this syndrome and what I could do to help her. Even friends, family, and co-workers looked things up for me and let me know anything they found. I refused to believe that this “syndrome” was going to have control over my daughter’s life and determine her future.

On July 23rd 2007, I received an urgent call from the NICU. It was the only day I hadn’t gone to the Hospital because i had decided to keep things as normal as possible for my son and made him a little birthday party. They told me my that my daughter’s belly was swollen, almost inflated like a balloon. They were going to get a scan done to see what was going on. About 2 hours later I received another call. This time I was told they had to do emergency surgery on her because she had “Necrotizing Endocardisis” which is an infection in the intestines which normally happens to premature babies, but my daughter was full term. At this time she was in Critical Condition. The next week or so was excruciating for us. She was in soo much pain and all the machines around were almost at 100%. Because her immune system was so low, she couldn’t get rid of the infection. Everything started to shut down.

On August 4th 2007 at 5:15pm, I lost MY PRINCESS. She was 2 1/2 months old. In her honor I had her entire funeral in yellow, all guests wore yellow. I dressed her as the princess she was in all gold and yellow with a little tiara. We all let a few dozen yellow balloons go up in the sky with messages on them for her of how much we loved her and missed her. I buried her in what is called “The Garden of Angels” which is a burial site here with only babies buried there. She was my princess!

Since then, I now have had another daughter whose name is Genesis Imani Rashid. The meaning of her name is as follows, Genesis: New begining, Imani: to have faith and belief, Rashid: Alah/God. She is a blessing to us that no one could ever understand. She is a twin image in every sence of Jayda. Of course she could never replace her sister. To this day I am in pain with the loss of my daughter. I fell into depression for years. I created a page for my daughter jayda on Carepages.com. It is a site where people can create pages of their loved ones who are ill and update everyone on the progress. You can also post picture, have friend request etc. It was a way to let my friends and family know updates on Jayda without me having to repeat myself about the difficult things my daughter was going through. She will always be in my thoughts, dreams and prayers and i will love her forever! I even did a tattoo on my back with her name, angel wings, date of birth and passing date in her memory. Mommy loves you Jayda Armani Rashid! 2007-2007

She asked me to go get some lunch and then return to the office for a fetal stress test. I complied and put a call in to my Mom as my husband was a truck driver and hard to reach. She reassured me that this was just to make sure everything was going normal, so I went and had lunch. I returned to the office that afternoon and had the fetal stress test which showed that I was indeed in preterm labor. My water was ‘leaking,’ I had developed an infection, and the baby was feeling the effects. I was ordered straight to the hospital where I was given numerous shots to try and stop the labor. No luck, so they decided to at least slow the labor down while they pumped me full of antibiotics and vitamin k shots to help progress the lungs of the baby. We bought less then 24 hours and at 11:33 the next morning I gave birth to a premature baby girl. My heart was broken as I felt I had not protected this baby and wasn’t being a good Mom before she even had a chance.

A picture of Baby Girl in the NICU was brought to me so that I would be prepared for when I would see her. I called our Pastor to come and pray for her as I was swimming in emotions. A few hours after her birth my husband and I were taken to the NICU where she lay hooked up to monitors and a breathing device that was taking the labor off of her under developed lungs. She looked so helpless and I felt even more helpless. All I could do was cry and apologize to anyone who would listen that I felt my body had failed to bring this baby into the world healthy.

After two days in the hospital I was released to go home. the only things I held in my arms when I left the hospital was my own bag. This was heart wrenching for me and I vowed to my Mom who was there to comfort me that I would not return to the hospital unless it was to bring my baby home. My Mom was patient with me and took my breast milk back to the hospital to be tube fed to my baby that evening. However, the next morning she woke me up, helped me get showered, and then gently but sternly told me that I would be delivering my breast milk and that she would be driving me to the hospital as many times as needed for me to deliver the milk and sit with my baby. My Mother would spend the time with other babies in the NICU who needed a ‘Grandma’ by their bedsides and developed long lasting friendships with the nurses. I was producing milk faster then my own baby could consume and quickly the little freezer became full when my Mother asked me to please donate the surplus to other babies who could use what I couldn’t. I did this not giving a second thought but to this little baby girl in front of me that I couldn’t even touch. Hours turned into days and some were good and some required a lot of prayer to get through, but get through them we did. Baby Girl was a fighter and she was giving it all she had. After a week the Doctor came to me as I sat beside her ‘womb’ and told me it was time for me to hold her. I was scared and excited as she still had tubes and monitors. The nurses gathered round for the occasion and she was laid in my arms. Her eyes opened and looked into mine, and we caught of this picture that I cherish to this day. She would come home not long after that and I never felt like I could thank the Doctors and nurses and therapists who worked with us on a regular basis until she got her clean bill of health and her ticket to go home.

The story doesn’t end there…3 years later I fnd out I am pregnant with my third child. We are excited and nervous as we visit the Doctor and she explains that I am considered a high risk pregnancy because of the last delivery being premature. I am careful in the first trimester and fall into a false sense of comfort when I reach my second trimester, but when I go in for a routine checkup at 34 weeks, I find out that again my body wants to deliver this child early. Having gone through this once before did not make it any easier. In fact Baby Boy was delivered quite quickly after leaving the Doctor’s that day and arriving at the hospital. Again because of his earlier then expected delivery he too had to take up residency in the NICU. He was not such a fighter and often it seemed he liked having the machines breathe for him and was content to not be touched. My heart broke once again as I was forced to leave the hospital with no baby in my arms. I went home to my other two children and my Mom once again jumped in to help.

This time there was a baby we met in the NICU who was born weighing less then a pound. She was a fighter and my Mom became her surrogate Grandmother. Without even having to ask I freely gave of my breast milk to this child who needed me. I would talk to my Baby Boy about his roommate and how well she was doing and that I expected him to do the same. He listened and although we went through both good days and days with setbacks he too would come home but with a monitor.

Here it is 2011 and Baby Girl is 18 and in her second year of College. She has a zest for life and a passion for playing Softball and working with preschoolers. Baby Boy is 15 and still content to be left alone (may be the age…hahahahaha) and loves to play baseball, ride his bike, and skateboard. We haven’t gotten to this stage in their lives without numerous Doctor visits for asthma, skin conditions, undiagnosable stomach conditions, ear infections, and surgeries to put in tubes, etc. But looking back it has been worth the detour we had to take via the NICU. They have also been joined by a younger brother who was born at 38 weeks but was able to come home less then 24 hours after his birth.

We have been blessed and we pray for all children both healthy and in need of taking the detour in their lives via the NICU. We pray for the parents and siblings as well as we know how it can take a toll on the family.

Emma is excited to turn 7 in just a few weeks. She lives with low vision due to ROP and mild Cerebral Palsy. We just came home tonight from her dance recital. The dance instructor does not treat her any differently than the other children and Emma has thrived in that environment. She is indeed a miracle child and we are excited that she is a part of our family.

Our lives were forever changed by Emma’s early birth. We had no idea how very precious life is until we sat by our little girls isolette and watched all the machines and nurses and drs. keep her alive. Emma was and still is a fighter. If our story can help even one other child then it willhave been worth it.

~Linda and David

Spencer was born at 35 wks. He weighed 5 lb. 9 oz. and was 17 in. long. He was taken to the nicu immediately. I heard all of his stories through my husband who would visit and take videos every hour.

I finally got to hold my little miracle the next morning. He was hooked up to a c-pap, so it was a little hard to see his cute face. He eventually stepped down on his oxygen needs and was able to be breathing room air for a full day.

There were a few set-backs, but 9 days later we were able to take him home with us. It was such a heartbreaking, but amazing experience. We were able to help the nurses with his needs, which helped us feel like we were bonding. He left a few oz. smaller, but was healthy!

~Jill

You can read more about Spencer and his family on their blogs: www.hnrksn.blogspot.com, and www.theadventurousspencer.blogspot.com

Upon arrival by ambulance a full medical team was waiting our arrival. For the first time I was told I had HELLP Syndrome and as soon as there was enough blood on hand for me in case I bled out my daughter was going to be born. Kayla Rose came into the world February 8th 2007 screaming and pink.

Kayla was born 2lbs 11oz 15 1/2 inches. She had IUGR because my placenta was dying. Although she was soo small she thankfully was extremely strong. It took 3 nurses and almost 1 1/2 hours to get a line in her and she had to have her blood thinned out. But thankfully never required any oxygen.

My princess spent 28 days in the NICU and I had to miss those first 2 days until a fabulous NICU nurse took pity on me and brought Kayla in her incubator to me because I was too weak to come to her but kept trying to get to her. I cannot say enough about the wonderful nurses in the NICU. They really are what make the experience bearable.

Kayla came home on a monitor because she had frequent bradys. She spent 5 months on the monitor but is now a happy, sassy and ginormous 3 1/2 year old.

~Krystal

I got to hold Jonathan for a few brief minutes, before they whisked him to the table to check him out. He was pink, but he wasn’t crying that well. They weighed him and Mike got to take some pictures, and they said they were taking him to the nursery to do some tests. Being a former med tech in the Air Force, I didn’t think anything of it. So, the Dr sews me up, Mike is in the waiting room talking to my mom, and his mom and step-dad telling him the stats. So, I’m in our room, all alone, listening to the lady in the next room giving birth, she is screaming the whole time. I got moved to a private room about 1.5 hrs later and Mike finally comes back, right before I got moved. This whole time, I had no idea what was going on with Jonathan. I figured they’d take some more APGAR scores and do the finger/foot print stuff and then bring him back to our room. After I got moved to the other room, Mike finally told me that Jonathan had been moved to the NICU cuz he wasn’t breathing on his own well, and that he had swallowed some fluids and told me about the cord being wrapped around his neck. (that’s when I figured out that’s why Dr C cut the cord and not Mike). And that he also was having some problems with his heart. The peditrician told Mike, Mom and my in-laws that Jonathan had 2 very small holes in his heart and that they were hearing 2 murmurs. So, of course, I’m crying now cuz I’ve just had a baby and haven’t gotten to see him since 3:55am and just learned that my baby’s heart is in trouble!! I”M FREAKED OUT NOW! (it’s now probably about 7am) Dr C finally came in and said that they were keeping Jonathan in the NICU, on O2 to help him breathe better and were monitoring his heart and had him on a feeding tube. They also did an Echo on him.

Right before I got to see him, the nurses tried weening him off the O2 tent, but he started grunting for air, so they put him back on the o2, but at a lesser dose. I got to see him about 9am and he was soooo tiny. I started crying when I saw all the tubes and IV’s on him. He had jet black hair and was gorgeous! Dr Z finally came in and told me about the murmurs and that he was ok, just being monitored. She also told us that when he was 3 weeks old, we’d have to take him to a cardiologist to be checked out. I didn’t get to hold him until that afternoon, when they finally released him from the NICU. He was in the NICU for about 14 hours.

I know he wasn’t in the NICU as long as a lot of babies usually are but that whole time I was scared and worried and frustrated cuz I couldn’t hold my baby. At his cardiologist appt, the Dr said that one of the murmurs had closed and that the other one should be gone by the time he was 9 months old. Today, he is a happy, healthy, 2.5 yr old that keeps us on our toes!!!

~Heather

Matt and I couldn’t wait to start a family so we were elated by a positive pregnancy test. I would have never guessed I was pregnant, but you know those “fatherly” intuitions…Matt INSISTED I was. And at 11pm one night, he was right.

I started going to my doctor right away (the next day) and started taking prenatal vitamins right away as well. It was a silly little pregnancy thing I was actually excited about doing. I couldn’t wait to get big and round and wear maternity clothes. I was ready to shop.

I went to my doctor once a month. We found out at 19 weeks that we were having a baby boy. . At 23 weeks things started going downhill. I had been experiencing some back pain from time to time and I just chalked it up as a pregnancy thing. I mentioned the discomfort to the doctor and he said agreed. He then took my blood pressure and it was on the high side . I was to come back a few days later for a recheck. When I went back y blood pressure was still high. He recommended bed rest and to do a 24 hour urine check to see if I was spilling protein. I was clueless as to what bed rest even was I even asked if I could work. He did give me the okay to go to thanksgiving with my family but to RELAX and check my blood pressure often We went to thanksgiving and before we went home my uncle checked my blood pressure. It was 160/110. I was instructed to call my doc if the bottom number was in the 90s. I called, I was told to head back to fort wayne and relax and lay down. My blood pressure had gone down and I was to take it often and call again if it constantly stayed up. I managed to make it to the next evening. The pain in my back was so bad and the pain meds that I was given weren’t helping. My blood pressure was climbing and at that point matt insisted I go to the emergency room.

After a call to my doc, they were expecting us in the ER. I wasn’t nervous when I got there at all. The staff was pretty laid back about everything when we got there. They treated me for heartburn, even though I said it wasn’t that. They drew some labs. Once the labs came back everyone was rushing around. They scurried around and got me up to the labor and delivery floor. I still had no idea what was going on or what was going to happen. The furthest thing from my mind was delivering our child.

In my mind, there were two ways to deliver a baby, you had a full term baby and took him or her home or you had a miscarriage. There was no inbetween for me. You could say I was very naïve. So like I said, the furthest thing from my mind was having my baby boy born anytime soon.

As we got up to the room, the doctor on call practically met us up there. He stated that I was in very grave condition and that I would be lucky to still be pregnant by Monday. Remember it’s Friday.

WHAT?? I’m in grave condition?? I just have a back ache. My baby can be born?? I just started feeling him move around last week and Matt hasn’t even felt him yet. He was a pound and a half at my last ultrasound. He’s not going to be born.

The doctor then stated I had a condition called HELLP Syndrome. It stands for hemolytic anemia, elevated liver enzymes and low platelet count. So in other words I had a life threatening condition and I was at risk for bleeding, my liver rupturing and having seizures due to high blood pressure. I WAS SCARED TO DEATH. After the doctor left, the whole room sobbing.. This couldn’t be happening. I was told that the best-case scenario was to spend 6 weeks in the hospital to bake baby jack a bit longer. That would put me at 30 weeks and give him a greater chance at surviving.

To make the rest of the time short, I didn’t last very long. Jack Matthew Bowling was born the following Monday morning at 12:12am. The doctor was right….I only lasted until Monday morning. All my labs were looking ugly and they couldn’t wait any longer for fear of my liver rupturing.

I was able to be awake during the c-section which was a blessing so that Matt could be there as well.

Jack came out and we heard a little cry that sounded just like a newborn kitten. The doctor told us how much he weighed. I heard 15 ounces. I looked at matt and said….how many pounds, I just heard 15 ounces. He said “baby, there are no pounds. Jack only weighs 15 ounces.”

15 OUNCES??? NO POUNDS?? YOU HAVE TO HAVE POUNDS. HE WAS 1.5 POUNDS AT HIS LAST ULTRASOUND 4 DAYS AGO. NO POUNDS. ???

But in fact, jack came out weighing 15 ounces and was 11.5 inches long. Almost the size of a dollar bill, but a bit longer.

And so our NICU journey began. And boy was it a roller coaster ……..and quite a long one.

He was put on an oscillator right away for life support and at 2 weeks he was put on a conventional ventilator. His biggest problem for the next three months was weaning off the ventilator. He couldn’t keep his oxygen sats stabilized…..ever. at one point they were even at zero.

One of the hardest things about the beginning of the NICU was not being able to hold our son, let alone touch him. we didn’t even see his whole face for about 3 days due to it being covered up. They had built him an artificial womb and he was hard to see. We were unable to move him at all, even to weigh him until after the first week because of the risk of him having a brain bleed. At one week he had a head scan and it came back with no bleeds WHAT A MIRACLE!. At this point he was weighed and much to our dismay he lost weight….and at 15 ounces, you can’t get much worse. He weighed 12.3 ounces. I remember a doctor telling me that his main concern right now as getting him over the 1 pound mark and after that happened he would feel much better about his outcome. Matt wanted to start putting milkshakes in his IVS and feedings.

And speaking of feedings. Jack started out at about 10 drops of breast milk every 3 hours and got all the way up to 2 ounces every 2-3 hours by the time we went home.

I can’t say that there was a point where things were SUPER scary. Everyday was scary. There were days that he had important tests done to determine more of an outcome for him. Like at 1 week old he had a heart echo and a brain scan to determine if he had a whole in his heart or if he had bleeding in the brain. Each of those results determined the next course of treatment.

He was put on nitric oxide at about 1 month of age and stayed on that for the next 2 months. That was to help with pulmonary hypertension. And along with prayers, I think that is one of the things that saved his life!!!

Also at about 1 month, something else happened that saved me. At this point during our journey I was already in a dark spot. I was depressed. I failed my son. I was robbed of my pregnancy. But On Christmas day, a wish of mine finally came true. After whining and begging one of the doctors, I was finally able to hold my son for the first time. It was one of the most incredible experiences I have ever had. I held him for about 20 minutes. He did wonderful. He was wide awake, his sats stayed up and so did his temperature.

He also had his eyes checked numerous times for a condition called retinopathy of prematurity. He came extremely close to needing laser eye surgery, but just in the knick of time, his eyes started to look better and we were saved from that.

At about 3 months of age, he was finally taken off the ventilator. We were very nervous about this. He hadn’t been tolerating being weaned off of it at all and even talked about a trach.

Feb 27, 2006 he was taken off of it and put on a CPAP. He hated it. It lasted about 10 days and then he was finally able to be on a nasal canula with oxygen. He seemed to tolerate that pretty well.

During the course of our 133 day stay, jack had 12 blood transfusions and 3 platelet transfusions. 2 heart echos, 2 brain scans, 1 hernia surgery, 1 MRI, over 150 xrays, about the same about of blood draws and probably about 20 different IV sites.

He had his first bottle 1 day after his original due date and came home about 1 month after his original due date. He came home with oxygen, an apnea monitor and a oxygen saturation monitor.

He was home for about 2 months and was able to come off of oxygen. He started physical therapy and occupational therapy through Indiana First steps and participated in an hour of therapy a week for each. He graduated from therapy about 1 week ago and is doing outstanding.

He did reach most of his milestones late. He sat up at 10 months. Crawled at about 13 months and walked at 15 months. Now he RUNS!!!!

Jack still sees many doctors. The pulmonologist, the ENT and the opthmalogist. They have become like family to us!!

Jack is now almost 5 years old and is doing exceptionally well. Except for about 9 set of ear tubes, glasses and mild asthma, he has no lasting effects.

Jack also is a wonderful BIG brother to his baby sister Brooke. She too was born prematurely due to HELLP syndrome at 33 weeks. She weighed 4 lbs 11 oz and was only in the NICU for 3 weeks. She is now almost 8 months old and is our little chunky monkey.

To get pictures or more info, you can visit our website at http://thebowling4.blogspot.com

Lindsay, Matt, Jack and baby Brooke

Thanks for all you do it help families in that situation!! I know personally they need it more than they could ever express.

~Jessica Churchill