NICU All-Stars


Born at 27 weeks 1 pounds, 12 1/2 ouncess

Our 5th child Gabriel was born at 27 weeks. I was admitted to hospital for preeclampsia 1 week and 2 days before he was delivered. It went from very mild to severe in just few days. We had never had any problems with any other pregnancy, and didn’t even have any close friends or family that had a preemie. We were very nervous and scared. Gabriel was no longer getting the oxygen through the placenta and had stopped growing. So delivery was the only option. We were able to get 2 steroid shots before he was born, which we were grateful. Gabriel was put on vent right away for his premature lungs, and was taken to the NICU. He was 1 pound 12 1/2 ounces and 12 3/4 inches long. Gabriel started having blood pressure issues, it was running too low. He was able to come off the vent at 6 days old and had to be put back on vent 7 days later due to developing MRSA pneumonia. The vent came back out at about one month old and was put on cycled Cpap once again. I was able to finally hold Gabriel at 8 days old, which was long enough for me! Gabriel did test positive for MRSA in his eyes when they tested his eye drainage he was having at about 2 months of age. We started tube feedings at just over 1 month of age and began oral feeds at about 2 months of age. Gabriel started out at 26 calories and then down to 24 calories. I did a lot of pumping of breast milk to help our little miracle grow and protect his body. I never really nursed much in NICU due to it really wore him out quickly.

Now at age 4 months I nurse all Feedings and Gabriel only gets 1-2 bottles of breast milk a day. Gabriel had several rounds of red blood cells, and platelets. Before Gabriel was discharged he had to have surgery for large bilateral inguinal hernias. We spent 86 long days in the NICU. We finally got to take our little miracle home on May 9, 2012, with due date being May 12th. He was a whopping 6 pounds 15 ounces! Last week we weighed in at 9 pounds 1 ounces at 4 months of age. Gabriel did come home on small amount of O2 and is currently still on it in June of 2012. We are hoping to have him off the O2 by end of summer, but we will see. The nurses and doctors at Blank NICU are very helpful, kind, and informative. Our primary nurses Kylie, Alisha, and Lori were truly amazing! We became very close to each other and still talk frequently and I send them pictures all the time! All of the NICU staff were all great! We couldn’t have asked for anyone better taking care of our son and being part of my family’s support team! The Holding Tiny Hands Foundation has also been very helpful and I have met a lot of great families and learned many things about preemies. Some of which is helpful with our son and other information that is just nice to know and maybe pass along to others.

Peyton & Grace 1 pound 12 ounces / 1 pound 13 ounces 
Born at 25 weeks

Our twins, Peyton and Grace, have been fighters from the very beginning. They truly wanted to be a part of this world and a part of our lives. We had a long battle to become pregnant. When we found out we were having twins we were to the moon and back with excitement.

At 11 weeks I started bleeding profusely with tennis ball sized clots. I immediately felt like I was having another miscarriage and losing our precious little ones. However, the ultrasound in the emergency room revealed that our twins were still kicking around and having a ball. We were told I would miscarry by the morning. Once again, this did not happen. The doctors thought the bleeding was caused by a small subchorionic hemorrhage, but they could not be sure. I had five bleeding episodes like this one throughout the next six weeks.

The bleeding stopped and I finally thought I could enjoy my pregnancy. At our mid-pregnancy ultrasound, 21 weeks gestation, it was revealed that my cervix was drastically shortening. I was hospitalized to make sure I was not in labor. Three days later an emergency cerclage was placed. We were told this had many risks due to how far into the twin pregnancy we were. Once again, our twins triumphed and made it through the surgery.

New Year’s Eve weekend I started feeling funny and having a discharge. I went into the doctor and during the examination he could see our daughters head. I was immediately hooked up to IV’s, given the lung steroid, and placed into an ambulance towards Mercy in Des Moines. My water broke during route and we had to stop in Ames to deliver Peyton and Grace. The NICU team came to the hospital and transported them via ambulance to the NICU. They were born at 25 weeks gestation. Peyton weighed 1 pound 12 ounces and Grace weighed 1 pound 13 ounces.

Grace: On day three of life our daughter was having extreme difficulties. She had multiple blood transfusions and they could not figure out where the blood was going. We were told she may not make it through the night. When they performed a head ultrasound they discovered that she had a grade 4 IVH on the left side. This caused her to have seizures throughout the week. She fought so hard and made it through the first four weeks of her life spent in a sedated state. We were told to expect the worst with her due to the extreme amount of damage the hemorrhage caused. After the first four weeks of her life she had a quiet NICU stay. She went home, after 86 days in the NICU, on oxygen and an apnea monitor. She is currently 7 months old; 4 months adjusted and is off of oxygen. She smiles all the time, giggles, and rolled to her tummy for the first time yesterday. So far, despite her grade 4 hemorrhage, she is meeting all of her developmental milestones!

Peyton: Peyton did well the first week of his life and was even on the CPAP right away. His PDA started giving him problems. Then he developed an infection in his eyes, a UTI, and a lung infection. All of these infections accompanied with his PDA made him a very sick boy. He had PDA surgery the third week of life. After the surgery he needed medication to help him urinate again. He battled the high frequency vent for a while. When his lungs were doing better it was discovered that he had a grade 2 – 3 kidney reflux. He was placed on antibiotics to prevent further UTI’s. He went home from the NICU after 86 days, on oxygen and an apnea monitor. Two months after being home we had another scare. He had to have double hernia surgery. We were afraid this would set him back with his oxygen levels, however it did not! He is currently 7 months, old 4 months adjusted and is off of oxygen. He still has kidney issues, which is causing high blood pressure. At a year of age he will have further testing to figure out what the next step is for him. He smiles, laughs, plays with toys, and rolls all over our living room. Despite all of his setbacks, he is meeting all of his developmental milestones for his adjusted age!

We were told we were going to lose Peyton and Grace so many times throughout this last year. They truly are our miracle babies and were meant to be a part of this world!

Brian and Robbie Pauly

Evan Kitchens
Born at 24 weeks 1 pounds, 7 ounces

I conceived my twin boys via IVF in June of 2011. As a result, we knew we were having twins from 7 weeks into my pregnancy and I was being watched by several doctors because we were having multiples. I was diagnosed with an incompetent cervix at 14 weeks into my pregnancy and placed on home bedrest at 16 weeks. My cervix continued to shorten at at 18 weeks I had an emergency cerclage placed to try and keep my cervix from shortening further and opening. It didn’t help but for a few weeks. At 21 weeks, my cervix was still shortening and I was placed on bedrest in the hospital. I only made it three more weeks and my boys were delivered at 24 weeks and 4 days gestation on November 29, 2011. Evan weighed 1 lb. 7 oz. and Blake weighed 1 lb. 9 oz.

Blake had many complications from the beginning. He developed pneumothoraces in his lungs, had a PDA and eventually had a grade 3 and grade 4 IVH (severe brain bleeds). Sadly, Blake passed away at 10 days old on December 9, 2011.

Evan had a very long and difficult road in the NICU. He spent 125 days, over 4 months, there. Evan has a congenital heart defect, called a VSD, also known as a hole in the heart. His biggest issue he had to overcome was his premature lungs. He was intubated for about 2 months and on CPAP for about 2 months. He went back and forth between the two assisted breathing methods several times over due to infections. He was colonized with MRSA and had an E Coli infection at 2 weeks. He also contracted CMV ( cytomegalovirus) at two months old. This was a pretty severe infection and it set him back on his progress for an entire month being re- intubated, etc. There were many times that we weren’t sure Evan would make it. He didn’t get put on nasal canula until he’d already been in the NICU for 100 days. He was prevented from bottle/breast feeding because of being intubated and/or on CPAP for so long. We didn’t begin bottle feeding him until 3 weeks before he came home. However, he took to that like a champ and got the hang of it really quickly. Evan came home on April 2, 2012. He came home on a low setting for oxygen.

Since being at home, Evan has progressed wonderfully! His oxygen saturation levels were so good that we were able to wean him off of his oxygen after 2.5 weeks at home. We’ve been going to many doctors appointments and he is being seen by Early Childhood Intervention. We received some good news from his cardiologist the other week that his VSD, hole in the heart, is beginning to close. We were beyond thrilled to hear this because if it continues to close on its own we can avoid open heart surgery. Obviously, this would be the best case scenario. I’m so afraid of him having to have such a serious surgery at a young age. Evan seems to be catching up developmentally to his adjusted age of 3 months. He’s smiling, talking and laughing. He also recently started to interact and hold onto his toys. Evan now weighs 11 lbs. 2 oz.! I can’t believe how big he is!! Sometimes I can’t believe he’s the same 1 lb. 7 oz. baby I once stared at in the NICU.

This road was not something I ever expected to have to go through. I’m still trying to come to terms with everything that happened. I’m also still grieving the loss of Evan’s brother, Blake. It’s hit me more since having Evan at home. However, I’m so in awe of how far Evan has come. He his my hero!!!

Olger Theodhore Konomi
Born at 30 weeks 3 pounds, 3 ounces – 15 inches

My pregnancy was so uneventful. Each doctor appointment went well and my husband and I were told to keep doing what we were doing. Then we got to week 28. I had a regular visit and was told my blood pressure was high, so I was asked to meet my OB at the hospital right across the street. I thought it was because they were closing, as it was five in the afternoon. My OB got me a room and a gown and said they were going to monitor me. I thought it was silly; I felt fine and nothing was wrong. This was the first appointment my husband was not able to come to, so I called him and told him I was going to be a little late because they wanted to check me out for a little while longer. Finally my OB came in and said, “we are giving you every medicine we can, but your blood pressure is not going down. We are sending you to Des Moines via ambulance and they might deliver your child tonight.” My entire world stopped for two seconds. I couldn’t breathe and I couldn’t think or move. So I just said, OK. My husband said he would meet me down in Des Moines.

For two weeks I was on strict bed rest. I was monitored very closely and had several ultrasounds to check my baby. Thankfully we were able to get two sets of steroid shots to help the development of my son’s lungs. I never had headaches, blurry vision, or felt any different; I kept telling the doctors they were wrong. I watched every video about premature labor and delivery, searched and sought out any piece of information about my condition known as severe PIH (pre-eclampsia) and prayed. At week 30 there was nothing anyone else could do, my protein levels reached over 5500 and my blood pressure was 200 over 100.

I remember laying there on the table and waiting. I didn’t know exactly what I was waiting for; perhaps a scene out of ER or something of the sort. Olger Theodhore Konomi was born on May 24, 2010 at 8:22 AM. He weighed three pounds and three ounces and was 15 and ¾ inches long. The cesarean doctor brought him out and he screamed. My husband went with our son who was whisked off by NICU nurses, and I finally allowed myself to cry. Relief flooded over me upon hearing my son; I didn’t know if I would ever be able to hear that sound.

Theo went straight to Vapotherm and did not need C-Pap or a ventilator. Although we got both sets of steroid shots while I was still pregnant Theo’s lungs were not quite developed enough to breathe on his own. Theo was able to come home on Wednesday June 30, 2012 and weighed a whopping 5 lbs. We spent 37 days in the NICU; which to some families is not very long; however it was a lifetime to us. He had to come home on oxygen and did not come off fully until six months after we were home. Breathing was our biggest battle. Theo’s apnea machine would constantly go off letting us know his levels were down and we needed to check on him. New parents constantly check their babies, but we felt we couldn’t breathe if he couldn’t breathe.

Now at almost two years old Theo is a thriving toddler. He loves to ‘drive’ on the lawn mower or in the golf cart on our property. Theo is very verbal and a dual language learner as his daddy speaks Albanian. With only a nebulizer needed occasionally we are free of tubes and wires, beeping and weekly doctor visits. Each day we look back at our journey and we know how blessed we are. We got to have ten extra weeks with our child before we were supposed to. We got to witness a miracle, and we love him to the moon and back.

Asher Wyllie
Born at 25 weeks 2 pounds, 1.8 ounces – 13 inches

After two relatively normal pregnancies (1st was 3 weeks late and 2nd was 5 days early), our 3rd son Asher was born at 25w 4d. At 5 weeks, I started bleeding profusely at a football game. Assuming a miscarriage, we went to the hospital. Through ultrasound we found out we had a large subchorionic hemorrhage (SCH) and also Twins! I bled again at 6 weeks and then had a holding period. At 9 weeks we found out we lost baby A, but baby B was holding on. At 15 weeks, we learned that baby B had an echogenic bowel; a sign of downs and that I needed a level 2 Ultra Sound (more detailed) at 18 weeks. I refused an amino, due to the loss of the first baby. 18 weeks came and at the ultrasound we learned that I also had a placenta previa and a placenta accreta (a rare and serious condition that could extend to a full hysterectomy and blood transfusions) We were told Asher would need to be delivered early, 34 weeks or so, to save me and my organs. At 24 weeks, we got the same prognosis, but he was growing well. I even had a celebratory lunch because I knew at 24 weeks my baby could survive.

Early on March 25, 2010, my Hubby’s 30th B-day, I passed out in the bathroom. Ryan got out of bed, checked on me in the dark and went back to bed. After about 5 min he got me some water and came back. I was delusional so I asked if there was blood, of course there was. Ryan got the neighbors and rushed me to Mercy.

Once at the hospital, the bleeding had subsided and they found Asher’s heartbeat. We had to wait till 7am for an ultrasound tech to come, so my husband left to go take the other kids to the sitter. At around 6am, while every doctor, life flight nurse, etc tried to start an IV in me, I started bleeding again. I called Ryan to come back. When he returned they had moved me into a ginormous room with tons of nurses and Dr. My normal OB doctor came in, and I asked if I could get the OB spec to deliver me, knowing my condition was rare and complicated. I had already planned on switching to him at 28 weeks, so I asked for him (BIG MISTAKE). Any who, they found Asher on US, and saw that my placenta had abrupted. So they rushed me off to the delivery room. I was so out of it, I just remember seeing a room packed full of Dr, nurses, specialists, etc. I remember being told my baby would be very sick and such then out I went. Ash was born at 8:09am, 2lb 1.8oz, barely 13 inches, eyes still fused (April 12th they opened!), bruised from head to toe, translucent skin and being a micro-preemie, he was in grave danger.

I was in and out in recovery, but I would over hear talking about things not being right and give her more blood etc. I remember them massaging my stomach, so I knew I must not have had the Hysterectomy. I was confused but still wasn’t all there. I remember a nurse saying she looks 9 months pregnant, that’s impossible and the being told I was going back to the OR. During this time my husband, luckily with the support of his mom, was eating lunch, wondering why he hadn’t seen me yet, at that moment, he heard my doctor being paged STAT to the OR, and then his phone rang. I remember being wheeled into the OR being moved from one table to the next, then the last memory I had was the taste of blood in my mouth and I started to gurgle and gag on it, I knew this wasn’t right then I was out. Next memory was waking up in ICU being scrubbed down (nice I know).

What had occurred was I went into Disseminated intravascular coagulation (DIC) (My blood stopped clotting) so I was bleeding out of all and any opening in my body (eyes, ears, mouth, nose, finger and toe nails, etc.) I also went into congestive heart failure (my left side still puffs up like a marshmallow) and my organs started shutting down. I had 40+ units of blood transfused alone in that surgery (not accounting the first surgery or recovery). The likelihood of survival was pretty non-existent. Lucky for us they pulled a wonderful Oncologist, Dr. Carlson in. He lifted my bladder flap (something that should have been done in the first operation) and found that the placenta had completely intertwined my cervix, uterus, and was attaching into my bladder. Turns out I had a placenta Increta, the worst and rarest form of accreta. I would have lost my bladder completely if we would have waited to 34+ weeks. Once the hysterectomy was completed, I started to come around. I was in ICU for 3 day, and the first night out of ICU I got to see Asher I realized the pictures and videos I had seen did him no justice and I left within a minute, I couldn’t handle it.

Asher’s due date was July 5, 2010. We spent 88 days in the NICU. We had to find that balance between having 2 little ones at home and feeling like we were there to support Ash. I would work half days; went back to work 2 weeks after his birth, and worked through his maternity leave. Asher was on the HFOV for 22 days, extubating himself on 4/11/10 (stinker), Switched to Dragger vent on 4/16/10, which meant on 4/17 I got to finally kangaroo hold him for the first time! On 4/29 Ash was switched to Vapotherm and the next day finally got to wear his first outfit (It was huge!). He stayed on Vapotherm for a month, and on 5/29, switched to wall 02(where we stayed at a 1/2L till June 2011, a whole year after his discharge from the NICU.) Asher had to do many, many rounds of phototherapy; it was something we became very accustomed to. We were very blessed that all of Ash’s IVH head scans came back negative and that we only experienced ROP mildly in the end. There were many days of tears and fears. Watching the constant X-rays, the dips in the monitors, the spells, not being able to hold or touch him. Some of the hardest times were when he needed surfactant treatments, which happened often. I remember one day walking into them bagging him. Those days were hard. Never knowing.

Asher had a PDA and Ventricular septal defect (VSD) and went through 3 rounds of meds to try to close his PDA, to no avail. We had the PDA surgery Dec 2010 because he failed to continue to gain weight. The VSD eventually and amazingly closed on its own. During his NICU stay we would have to stop feeding him, in 3 day shots, to give him meds, but he always seemed to rebound well with feedings when they started again. Those big milestones, breaking birth weight, doubling birth weight, wearing clothes, baths, holding him, touching him, feedings, regulating own temp, getting a “big boy bed”, and passing a car seat test are all things that you never expect to be so excited for. We went home weighing 6lb 1.1oz and 18 3/4in long. We got to come home to Concentrators, O2 tanks, apnea monitors, calcium meds and we lived this life for a whole year. It amazing how strange it was when we got off the O2 how hard it was to feel safe without it, and how quiet it was! We were hospitalized for RSV in Feb 2011, even though we had been getting the RSV shots. He still has Bronchopulmonary Dysplasia (BPD) and Chronic Lung Disease (CLD), which we are still fighting. Luckily he was approved again this year from the RSV shots, we Neb 3 times a day and is also started on Pulmacort daily. This is a battle we will fight long term, but it’s definitely worth the battle.

Now he’s an active crazy smart almost 2 year old (March 25) who hates his RSV shots and daily nebs. He loves to play with his big brothers, scale up the oven doors, spell (I’m serious, I have a video!) and play games on his Ipad (he got one for his birthday ) He got on as the “Cutest Kid” (funny) and the amazement it was seeing him break the milestones you spent his whole life worrying about (rolling, crawling, walking, talking, etc.) He spent a whole year hindered greatly by all his cords, cables, etc. so those milestones came slower than expected but they came! He has hit all his milestones for the adjusted and most of the unadjusted ages. He was placed in a U of I study and we found out his language skills are awesome! We also battle to gain weight still, though we eat our daily carnation instant breakfast. We have been stuck at the weight of 22lbs for months now, and he’s >1% on the growth chart, so he’s out little short stack. Sometimes it’s funny to see my “2 yr old in 12 month clothes!

Dayne Harold Bennett was born nearly 17 weeks early at 23 weeks 3 days gestation on Oct. 27, 2007 weighing 1 lb 4 oz and 11 inches long! His mom’s cervix opened prematurely and his bag of water was protruding through. At 22 weeks 2 days it was way too early, so they were taken by ambulance to Mercy from Knoxville. There the contractions were slowed with many meds and mom was put on her “head” to hopefully let gravity work and give Dayne the much needed extra weeks. An abruption was also not working in their favor to buy more time. Mom was bleeding pretty bad, but against all odds, labor held off for 8 days saving Dayne’s life! He was born naturally breech at 5:38 pm on Oct. 27. He was doing amazingly well, having apgar scores of 6 and 8! He had a pretty uneventful first week doing very well, but after that week-long grace period, his tiny body was having trouble keeping up, so he was put on the high frequency vent and had up and down days for a while. The biggest scare came when Dayne was 2 weeks old. His body was backing up with fluid, pushing on his lungs and causing his kidneys to shut down. He was very sick and was not expected to live. A drain was put in his belly to try and to alleviate some pressure and stabilize him enough to take to surgery if need be; thankfully a drain was all he needed. For an unexplained reason, free fluid was backing up in his abdomen and the drain fixed the problem and he got immediately better! After that scare, Dayne’s stay was relatively uneventful with bad gases, frequent vent setting changes, and numerous blood and platelet transfusions. After the help of steroids, he no longer needed the vent and was breathing on his own with the help of vapo therm by December of 2001. He did not have any brain bleeds or need to have the pda heart surgery! He was due to come home on Jan. 24, 2008, but the ROP in his eyes was worsening and needing close monitoring. Finally on Jan. 28, 2008 after 93 days in the NICU he was able to come home. He came home on 1/4 liter of oxygen and apnea and pulse ox monitors. After 2 weeks at home his eyes had gotten to the point that he needed surgery, so he went back to the NICU on Feb. 11, 2008 for laser eye surgery. What was supposed to be an overnight stay turned into a week stay due to high blood pressure. At home his blood pressure was monitored very closely, with meds for a couple weeks then close watching for a year. After a year, his blood pressure problems were completely resolved. He no longer needed oxygen by mid March 2008. At 7 months old, Dayne developed breathing difficulties. After two hospital stays, an exploratory surgery was performed and a cyst that was blocking over half his airway was discovered and removed. The cause was thought to be from being intubated for a period of time as a newborn. After that surgery he thrived and was caught up developmentally to his peers by 10 months actual age (not adjusted). Today at almost 4 years old, Dayne has no long term health problems and is a smart, very active little boy! He does have a small leak in one of his heart valves which was discovered when he had the high blood pressure, but he has no health issues because of it, just monitored every year. His cardiologists says it has nothing to do with his prematurity. He got glasses in June 2011, most likely due to his ROP, but his eyes are far from bad, just a little near sided. Dayne is an amazing miracle with credit going to the great care he received at Mercy NICU! He is for sure mommy and daddy’s all star!

Kyler entered the world on Sept. 11, 2010. He was 25 weeks gestation. He weighed in at 2 lbs 3 oz and was 13 ½ in. He was amazingly only intubated for the first 12 hours of his life until he moved up to CPAP. One week later, it was discovered that he had an open PDA. So, at one week of age, our tiny boy had heart surgery, a PDA ligation. Following that, he was reintubated for 3 days. One week after his PDA ligation, we walked into the NICU to what would be the worst day of my life. Kyler’s room was filled with medical staff. In the middle of them was my tiny boy-blue and lifeless, with a neonatologist at his head frantically trying to get him intubated. Aside from respiratory arrest and heart surgery, a few of the more “minor issues” we dealt with were Chronic Lung Disease, severe reflux, kidney issues, GI motility issues and constipation, high carbon dioxide levels, Retinopathy of Prematurity, and the “normal” preemie feeding issues. Kyler finally came home to us after a 94 day NICU stay, a full 3 weeks before his due date! One of his primary nurses nicknamed his “rock star” and to this day, that nickname has stuck.

Over the last year, Kyler has had 2 hospitalizations for RSV and respiratory issues. He continues to have severe reflux, constipation, and frequent respiratory issues from chronic lung disease. He has a scalp hemangioma, currently being treated with Propanolol. He has a brain malformation that will be a constant worry for his entire life and will more than likely require brain surgery at some point

To look at him, he looks like a happy, healthy, 9 month old baby (his adjusted age). He is gaining weight well despite his reflux. He loves to play with his older brother and sister. We are amazed by his progress every day. He is our rock star.

Tristan Everett Carden
Born 10 weeks early 2 pounds, 5 ounces

On December 25, 2009, Tristan Everett Carden came into this world at 30 weeks gestation weighing 2 pounds 5 ounces. Tristan was taken to the NICU where he thrived for about a week. One day we received news from our doctor that Tristan had a very bad infection called Necrotizing enterocolitis. The doctor explained to us that this infection was very severe. Possible treatment options were antibiotics and surgery. Tristan received antibiotics for three days but never improved. It was at that point that the doctor informed us that they were now dealing with not only Necrotizing enterocolitis but also Disseminated Intravascular Coagulation. He told us that they were going to transfer him to Children’s Healthcare for surgery the next day but were probably going to have to stay at our current hospital that night because they were not sure he would make it through the night.

Tristan had two surgeries to correct the problem with his intestines. In February 2010, Tristan was allowed to come home weighing almost five pounds. We spent two months at home with Tristan when he suddenly stopped eating. So, once again, he was taken to Children’s Healthcare where the surgeon informed us that he was having complications with scar tissue from the last surgery. He would, yet again, have to endure another surgery to remove the scar tissue.

Tristan is now a healthy happy almost-two-year old. Other than the scar on his belly from the surgeries, you would never know that he was born early. He weighs 31 pounds and is doing things any toddler would be doing. When all was said and done, he spent 55 days in the NICU and 20 days in the hospital during surgeries.

We learned so much during our stay in the NICU that led us to volunteer with many charities that help preemie babies. We are very thankful for every doctor, surgeon, and nurse who helped us during this very difficult time. Although our experience has made us a much stronger family, our wish is that no family ever has to go through what we did.

John Carden, proud dad

Lilia Faber
Born 17 weeks early 1 pound, 3 ounces - 11.5 inches long

Our world was turned upside down on August 8, 2007 when we went into premature labor with our first child at just 23 weeks gestation. All of our dreams of what the birth of a daughter would be was immediately squashed. We were prepared for the worst, that they probably wouldn’t be able to hold off her birth, and that she probably would not survive, and if she did, the chances were high that she would have severe medical problems throughout her life. Somehow though, labor stopped and we received two rounds of steroids to help give our tiny girl a chance at life. On August 10, my water broke and our precious girl entered this world with an unexpected scream we will never forget. Weighing 1 lb. 3 oz., she was quickly whisked away to the NICU where she began her long fight to come home.

From the moment we saw our little girl, we were completely in awe of her– so tiny but so strong. Being born at just 23.3 weeks gestation, her skin was transparent and very bruised from delivery. She was covered in plastic and put under bilirubin lights and on the high frequency ventilator. She did amazing from the moment she was born. At 10 days old, Lilia had Patent Ductus Arteriosus legation surgery (heart). She spent 8 weeks on a ventilator, another 6 weeks on vaportherm, and then finally on oxygen. Lilia quickly picked up feeding and came home after 110 days in the NICU, at 39 weeks gestation. Lilia came home diagnosed with bronchopulmonary dysplasia and on oxygen with monitors, but we were just thankful to have her with us.

Our time once home went really well. She continued to make improvements on her oxygen needs. At about 10 months old, she was able to get through daytime without oxygen but still needed it while sleeping. She needed this until she was 21 months old when we finally took extra steps with medications to help her lungs get over that last hump. Lilia is now a happy, healthy 4 year old who is as feisty as ever. She is our true inspiration in helping to found Holding Tiny Hands. We know how truly blessed we are that she is here with us today and that she has no lingering medical conditions due to her prematurity. We wanted to find a way to give back to the NICU, to help families going through similar situations, and to give them hope for the future.

Lexi & Matt Faber, proud parents

Thomas Russell Selby
Born 12 weeks early 2 pounds, 1 ounce - 12.5 inches long

On January 22, 2009, Thomas Russell Selby entered the world at 28 weeks gestation and weighing two pounds, one ounce. Early challenges included chronic lung disease, grade II brain bleed, severe acid reflux, and one kidney reduced in size and not growing normally. “Tommy” spent 120 days in the NICU. After overcoming the brain bleed and the issue with his kidney, Tommy came home on oxygen, monitors, and a litany of medications.

We enjoyed a short time home with Tommy, until he suddenly stopped eating. Unbeknownst to us, Tommy again was on the “rollercoaster,” a term commonly used to describe the NICU experience. After a regimen of tests and procedures, it was determined that he was fine physically and, therefore, diagnosed as failure to thrive. Because he was no longer able to sustain himself on what he was able to take in by mouth, a gastrointestinal tube (g-tube) was surgically implanted in his stomach. Two years later, Tommy continues to receive the majority of his nutrition through his g-tube via a pump mechanism.

If you didn’t know that Tommy had this affliction, you wouldn’t think of him as anything but a normal, highly active, ornery two-year old. He loves to torment his older brother and is often the crux of conflict between the two. He has a very charming demeanor and uses it to get away with anything he can.

Our experience with Tommy is what led to the creation of Holding Tiny Hands. Finding the best care took many hours of research, many hours with doctors and specialists (who often conflicted with one another), and many hours of watching our son struggle. As we continue to search for an effective therapy, we understand that it’s important for parents to have a solid network of support from others who have shared similar experiences. This is the pillar of Holding Tiny Hands— providing encouragement, strength, and hope.