Life After NICU- The New Normal
I have been a NICU Mom four times. By the fourth time, I considered myself a pro. I knew the ins and outs, knew the schedules, what I could and could not do, what options were available for me in the NICU- I knew it all. What I didn’t know is how much different life after having had an extended NICU stay would be like.
My first daughter was born almost 8 years ago with two congenital birth defects. The combination gave her a less than 1% chance of surviving any surgery. My husband and I made the single most difficult decisions of our lives. We chose to withdrawal care and let her pass away peacefully in our arms. She was with us for only 3 short days but in NICU time it felt like months. The following months were complete torture. I relived every moment of those three days. I was stuck in a state of grief for 8 months. I didn’t have a baby to care for at home, all I knew was this raw emotion of isolation.
When my husband and I decided to try again, we were shocked to find out we were expecting twins. Our twin girls, Grace and Lily, arrived 6 weeks premature. Grace needed no additional support while Lily suffered from bradycardia and slight breathing issues. Our NICU stay was brief; leaving after two weeks. Lily came on an apnea monitor because of her heart slowing when nursing. That monitor was a machine to wake the dead. In the middle of the night, its siren would beep like a freight train warning people of its upcoming arrival. The twins thrived at home and Lily was cleared from her monitor after a couple months. We were automatically enrolled in the Early Intervention services through our state. Early Intervention (EI) is a focusing on helping babies and toddler with developmental delays or disabilities. The twins were assessed and needed little intervention. Lily suffered from torticollis and required a couple sessions of physical therapy.
As the girls turned one, my husband and I found out we were pregnant again. To our dismay, I suffered from two rare and potentially fatal pregnancy complication. I was told I would likely lose the baby, but if the pregnancy would continue the baby, as well as myself, would face an extensive intensive care unit stay. Our son grew in my womb and surprised even the doctors. His placenta was attached to my cesearn section scar on my uterus and as it stretched the placenta needed more nutrition and essentially branched out of my uterus and attached to my bladder. At a little over 32 weeks, my uterus completely ruptured. I was put under complete anesthesia and awoke to being on a ventilation machine. My son was on life support in the NICU. I found myself back in this battle zone nut more comfortable with my surroundings. I was unable to see my son for the first two weeks of his life due to numerous complication and infections I suffered during his birth. To this day, I have no reallocation of those first couple weeks of his life. BY the time I was able to hold him, he had a feeding tube placed and was on oxygen. He was doing well, just needing some assistance here and there. After 3 weeks, he was able to come home. This time I felt overwhelmed. He came home on an apnea monitor for his bradycardia and apnea episodes. He had his NG tube removed the day before and wasn’t eating well. He vomited after every feed. He cried more than any baby I have ever known. He was fragile and for the first time I was afraid of being a mom. To say the transition from NICU to home was an adjustment would be an understatement, it was a new kind of normal.
Stephen was home for a month when he could not hold down any feeds at all. He was making strange gurgling noises, but I didn’t think anything of it. I was feeding him an once an hour and he was always vomiting it back up. It was 5am, I hadn’t slept all night and neither did he. I had changed the bassinet sheets 6 times, my clothes three times and him about 10. I had enough. I packed him up and my husband and I drove down the hospital. Low and behold we found out that Stephen had actually contracted RSV and was suffering from it for some time. He also was allergic to the formula he was on and was changed to an elemental formula, which broke down the elements in the formula so his little body didn’t have to. After a couple weeks, we were back at home and found ourselves in connecting back up with EI services. Stephen needed occupational therapy to learn how to drink and eat and received physical therapy and a helmet for torticollis. By the time he turned one, he seemed to be growing perfectly.
I enjoyed having a boy in the mix of our twin girls. It was fun. I loved every single second of watching him grow. As Stephen turned 30 months, he started showing signs of speech delay and physical setbacks. He didn’t talk, he barely walked and could not run. I called our EI coordinator right away. After a couple months of barely any improvement I was told to call a rehabilitation physician, otherwise known as a Physiatrists. Within one meeting, the doctor was able to tell us that there was in fact more going on with Stephen than we thought. An overall low muscle tone or hypotonia, prevented him to be able to walk well, run and even talk. His mouth muscles were severely premature and inhibited him from forming words. He also had dysphagia from the hypotonia which is difficulty swallowing and my almost 3 year old drooled more than a 6 month old baby. He had obvious signs of hip dysplasia from not walking correctly and hyperextended his knees which could lead to further injury. The doctor suggested Stephen be placed in an intense program of various therapies. It was at that time that I had broken down. I tried to long for so hard to make him “okay”. He overcame his prematurity yet still suffered from all of these effects as a result of it. We went to therapy 6 times a week, sometimes leaving one therapy to go to another. He needed corrective braces which would help teach him to walk properly. After 7 months of intensive therapy, we had to pull him out of the program. I was diagnosed with Stage IV breast cancer that required weekly chemotherapy infusions among other appointments.
Nearly two years later, I am happy to report that he continues to amaze me. Since he was no longer receiving physical therapy, we enrolled him in Karate and swimming. He receives speech therapy weekly and even started pre-school this year. Stephen is able to walk with no assistance and has even started running! He taught me how to fight to live and it is because of him and my other NICU babies that I am able to have a smile on my face despite my own diagnosis. It may not be today, and it won’t be tomorrow but I know one day he will be just fine . . .
Having a child pass away is a loss unlike any other, a pain that I never could have imagined, a hole in my hearts that nothing will ever fill, a missing piece of our souls that no one can replace. Our Milana became an angel and received her beautiful wings on June 21, 2012. There are no words that can truly describe that day, that minute, that second when my husband & I held her close as she took her last breath & closed her eyes. Nobody should have to experience that. She was finally at rest after suffering for days from Acute Myeloid Leukemia so that brought us comfort. We held her forever that day. We had the peace of knowing she went to Heaven knowing she was loved more than anyone could imagine. It is still unreal to us. We just can't believe it. I sob as I type this. More than anything, we want her back...to know that's not possible is heartbreaking. Milana will ALWAYS be our dream come true! Since I was a little girl, she was my wish...my beautiful princess. We personally believe that we receive signs from our angel.
She sends us pennies, butterflies & other beautiful signs! For us, they help us heal. Another thing that helps me feel serene is to visit with my angel. It's so peaceful to feel the warm sunshine and the cool breeze while listening to the birds chirping & Milana's tiny wind chimes making the most beautiful music. I know that some people find it difficult/too painful to visit their loved ones in the cemetery, but I find it so comforting. Not sure if that's odd...it just calms me. I decorate her resting place for every holiday and every season. Its my way of still "taking care of her". I'm her mommy and I have that inborn need to take care of her and be sure that she's happy. This is one of the only ways I know how to do this.
Every second since Milana became an angel has been & continues to be a struggle. Our hearts will never be whole again. We smile and live each day in honor of our sweet Milana! As I mentioned earlier, we are so grateful for all of the "signs" our precious angel sends to us daily. They remind us that Milana's still with us & watching over us. It is said that time heals all wounds. Well, I'm not sure how much time it takes because it has been over 2 years and the pain of losing Milana is so sharp that it feels like yesterday. Tim & I miss her so much it's unreal. People often ask us how we live without her...how we go to work, take care of things, etc. and honestly, there are times that we don't know how we do it. We do try to remember that even though we have lost our tiny angel, there are people out there fighting their own heartbreaking battles right now. We pray for them. I know that this post is written purely from my point of view. However, when Milana died, I said to my mom that I wish there was a book to tell me what to do because I don't know how to live without her. As time went on, I realized that there isn't a set way to "get through" life without her. We simply had to live! We will always miss her, but she would have wanted us to live life to the fullest for her. There isn't a right way to grieve. You must do what is right for you!
Finding Hope in Memory
How does one go on after losing a child? That is a question I asked myself very often the months following my first born daughter, Nevaeh’s death. It didn’t seem right that the world was going on like normal around me. It felt like everything and everyone should just stop and also feel my pain. I remember trying to be so strong because everyone was worried about me. So I would put on a good show during the day, and at night I would just weep into my pillow. I did a lot of praying and a lot of talking to God.
For the longest time I couldn’t look at a picture of Nevaeh. Every time I did, it was like a shooting pain right to my heart. Pictures, memories, and mementos were too much of a reminder that she wasn’t here with me. Many days it seemed like I was walking through a dream. Did all that really happen? Did I really have a precious daughter here on this earth for six weeks? Or did I just dream that?
I don’t know how I got through the first year after her death. I think I just took it one day at a time, and sometimes even one hour at a time. People say that time heals all wounds. This is a wound that will never be healed. However, the pain has lessened over time. I am now able to look at photos of Nevaeh and not cry. I can actually smile at them occasionally, and be happy that she was in my life for such a short time. Of course the hurt will never go away. And all the questions and wondering. I wonder what she would look like today. I wonder what her personality would be like. Would pink be her favorite color?
Five years after Nevaeh’s death, I finally was ready to honor her memory somehow. I finally felt that the grip that grief had on my heart had lessened enough. I was so worried that people would forget her. I knew that I would never forget her, but I wanted other people to remember her. I wanted her memory to live on and I wanted people to know her story. I wanted to erase the stigma and uncomfortableness that comes with telling people you had a child die. I needed to turn a negative situation into something positive.
My goal was to help parents that were in the same situation as I once was. The six weeks that my daughter spent in the NICU, were the loneliest of my life. Having no family close by and a husband that had to still go to work to provide for us, I was often at the NICU all by myself. I am so thankful for the wonderful nurses and volunteers who kept me company. I remember nurses bringing in blankets or stuffed animals that were donated by people. I found comfort in people’s generosity and gifts. It gave me hope in a time that it was so hard to have hope. I vowed I would always pay it forward, and try to comfort a mom in need – like I once was.
By starting Nevaeh’s Rainbow Project with Project Sweet Peas, I hope I provide some amount of comfort to parents who endure the same pain of watching their child struggle for their life and to those that have also had to say goodbye. I would like families to know that regardless of the outcome there is hope in every situation and happiness in every memory.
Feeding in the NICU
Most parents aren’t expecting a stint in the neonatal intensive care unit (NICU) when they welcome their new baby into the world so it isn’t an experience that parents typically prepare for. Well thought out plans like how to feed your baby may have to be altered, but you do have options in the NICU. The following article is a guide to feeding in the NICU, including some of the difficult situations that parents and babies encounter depending on the baby’s level of maturity. Please reach out to your trusted health care professionals for more information and support.
Overview Feeding in the NICU
Babies in the NICU often have feeding difficulties because the activity requires many different body systems, which often are not fully developed. Keep in mind that you may have many steps forward and some steps back in success with feeding; do not be discouraged by this.
Some NICUs use speech therapists to aid with feeding therapy. At some point, the speech therapist will evaluate every infant that is admitted to the NICU to determine whether there will be feeding difficulties. According to a speech therapist, Lee Ann Damian, from Dayton Children’s Hospital “The baby’s ability to feed and gain weight is not only a survival issue, but is one of the main factors in determining how quickly that baby can go home. The sooner we can get the baby happy and comfortable with feeding, the better it will be for the entire family.”
Upon arriving at the NICU, baby will often be too sick or even too small to bottle or breastfeed. In this case, your baby’s medical team will insert a small catheter (IV) in one of three ways -- PICC lines, peripheral IV, and Umbilical Artery Catheter. The medical team will sometimes ask you to leave the NICU unit during this insertion to better concentrate. This therapy is used to deliver fluids and medications, which baby will eventually be weaned off of.
A gavage must be used for feeding of babies who are smaller or too sick to be fed by bottle or breast. A small tube will be guided through the baby’s mouth or nose into the stomach and through this tube a small amount of breast milk or formula will be trickled into baby’s stomach. Inserting this tube will cause some discomfort, but after it is in place it can be left there for up to 7 days before needing to be changed. A pacifier will often be given while gavage feeding in order to strengthen your baby’s suckling. At about 32-34 weeks of age your baby should be strong enough to start transitioning into bottle or breastfeeding.
Breastfeeding in the NICU
It is important to make your baby’s medical team aware of your desire to breastfeed. A collaborative effort between the mother, nurses, and lactation consultants is required for a mother to be successful with breastfeeding their NICU baby. To heighten the chance of successful breastfeeding, the baby’s mother should start pumping immediately after birth and frequently (about every 2 hours or so). The mother should make sure to pump until the breast is empty of milk, including the hind milk that is high in milk fat and essential to baby’s nutritional needs. Do not be discouraged if you are producing a small amount of milk at first. It is important to be persistent during this process. Every mother is going to produce breast milk differently.
Breastfeeding in the NICU requires an enormous amount of patience. Preemies and sick babies take a long amount of time to learn the coordination of suckling, breathing, and swallowing. A popular method to start the breastfeeding process is Kangaroo Care, a method that involves skin-to-skin contact. During this process, the baby, clothed only in a diaper, will be snuggled up to your bare chest. This can be done by either the mother or father for several hours a day. Kangaroo Care has many benefits, including heart rate stabilization, increased weight gain, and will lead to a better chance to breastfeed. Parents feel some additional benefits from Kangaroo Care, such as increased sense of control, increased milk production, bonding, etc. Another helpful method is to introduce a pacifier dipped in breast milk. This helps promote suckling.
Kangaroo Care creates more opportunity for baby to “go to the breast.” This is a time for the baby to explore and smell mother’s nipple. It is important to pump before going on to this step so there will not be too much milk. Remember it takes the coordination of suckling, breathing, and swallowing on your baby’s part to be successful so it is central to be very patient.
Formula Feeding in the NICU
Although formula feeding might not have been your first option, your baby can thrive with this method too. There are many formula options and your NICU team will assist with picking the one best suited for your baby’s needs.
Although your baby’s time in the NICU will most likely include some challenges with feeding, there are many methods (many not included within this article) and skilled professionals to help you and your baby overcome them.
Feeding Matters mission is to bring pediatric feeding struggles to the forefront so infants and children are identified early, families' voices are heard, and medical professionals are equipped to deliver collaborative care. Feeding Matters overcome the complex issues of pediatric feeding struggles through our five mission pillars: Education, Advocacy, Research, Treatment, and Support.
Oley Foundation enriches the lives of those requiring home intravenous and tube feeding through education, outreach, and networking.Feeding Matters brings pediatric feeding struggles to the forefront so infants and children are identified early, families' voices are heard, and medical professionals are equipped to deliver collaborative care.
La Leche League supports mothers worldwide to breastfeed through mother-to-mother support, encouragement, information, and education
Feeding Tube Awareness Foundation dedicated to providing parents and caregivers with the information needed for day-to-day life with a child who is tube-fed.
Women, Infants and Children (WIC) provides Federal grants to States for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age five who are found to be at nutritional risk.
GI Kids provides easy to understand information about the treatment and management of these pediatric digestive conditions for children and parents
Hand to Hold provides comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications.
United States Breastfeeding Committe (USBC): The mission of USBC is to improve the Nation's health by working collaboratively to protect, promote, and support breastfeeding.
WIC The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) provides Federal grants to States for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age five who are found to be at nutritional risk.
PLEASE NOTE: The contents of this article is for informational purposes only. Nothing contained in this article should be considered or used as a substitute for professional medical or mental health advice, diagnosis, or treatment.
"How to Feed your NICU Baby." Bay State Health. N.p., n.d. Web. 14 Sept. 2014. <http://baystatehealth.com/Baystate/Main+
"In the NICU." Feeding your baby in the NICU. N.p., 1 Aug. 2014. Web. 14 Sept. 2014. <http://www.marchofdimes.org/baby/feeding-your-baby-in-the-nicu.aspx>.
"Meeting the Challenges of Breast-Feeding in the NICU." Pregnancy.org. N.p., n.d. Web. 14 Sept. 2014. <http://www.pregnancy.org/article/meeting-challenges-breast-feeding-nicu>.
"NICU Feeding Baby Steps." The Chester County Hospital. N.p., n.d. Web. 14 Sept. 2014. <http://www.chestercountyhospital.org/cchpage.asp?p=1424>.
"Pediatric Dysphagia." : Overview. Web. 14 Sept. 2014. http://www.asha.org/PRPSpecificTopic.aspx?folderid=8589934965§ion=Assessment.
"Speech therapy in the NICU: Key to babies' survival." Speech therapy for premature newborns : The Children's Medical Center of Dayton. Web. 14 Sept. 2014. http://www.childrensdayton.org
Thank you, NICU - Moreen
My name is Moreen Blackstock and I would like to share my story and greatly acknowledge the hospital that I delivered our “Miracle Baby” named Miranda. She was born December 23, 2009 at 29 weeks weighing in at 2 pounds and 9.5 ozs. Being 1st time parents my husband and I didn't know what was in store for us but the team at Regional Newborn Center (RNC) and the NICU in Monmouth Medical Center located in Long Branch New Jersey, was on our side throughout our family's journey.
As Miranda settled into her temporary home in NICU, our lives began to get a little rocky. It started with myself, fighting infections after my C-section and then having emergency surgery to remove my gallbladder. Just when we thought things were back to normal, my husband became ill due to health issues that he had and was admitted into the hospital.
We were all admitted into three different area hospitals at the same time. It was unreal to even comprehend because the thought in our minds was who was going to take care of our baby.
On January 7, 2010 Miranda's father, passed away leaving behind his miracle baby still in RNC and myself still admitted recuperating from surgery.
I cannot stress enough how the staff at RNC and NICU has been so supportive of our family while we went through so many struggles. I thank GOD for having them in my life and providing the care that she needed. Today she is 4 years old and full of life. Each year the organization BIG STEPS LITTLE FEET located in Monmouth Medical Center in Long Branch NJ has their annual walk to benefit the Neonatal Intensive Care Unit. This organization raises funds to provide additional services or equipment to care for these high-risk babies. They were a blessing to me and my family.
A Grandparent's View in the NICU
Congratulations on becoming a grandparent. Whether or not this is your first grandchild, having a grandchild in the NICU can bring its own set of challenges and worries. You may find yourself looking around the NICU, surprised at all the machinery, and overwhelmed with worry at the situation. Grandparents often experience their own unique set of feelings as you worry about your child and what they are dealing with, as well as your grandchild and the struggles they are facing. Whatever brought your grandchild to the NICU, it is important to take a step back from the situation and determine the best ways to care for you and your family.
Allow yourself to feel and express emotions when the time is right. You may want to be strong for the sake of your child, and while that is admirable and important, it is may not be sustainable forever. Find a time to express whatever emotions you are feeling outside of the NICU. You may find journaling to be helpful, or talking to your spouse, partner or a trusted friend. It’s important not to keep your feelings bottled up.
Make sure you are emotionally available to your child, her/his spouse and your other grandchildren. Remember your child is undergoing intense emotions right now and they need you now more than ever. You are an integral part of their journey. Acknowledge their feelings and allow them to speak freely about what they are going through. It is important to respect the emotions they are experiencing and the decisions they are making for their baby. Accept that you will never be able to fix the situation. Rather than fixing the situation you must be a support and source of comfort for your child right now.
Find ways that you can help. Offer to help with baby in the NICU. In addition to visiting the NICU, you can prepare meals, offer to clean their house, pick up the mail, or run some errands. If there are other siblings, taking care of them will also relieve some of the stress. If you don’t live nearby but still want to help, sending the family gift cards to restaurants and gas stations near the hospital can help relieve some financial burden. You can also offer to be the contact person for extended family to return phone calls and give updates on the latest news regarding the new baby.
Whatever help you are able to offer, it will be greatly appreciated.
The Road Less Traveled
written byTwo roads diverged in a wood, and I - Took the one less traveled by And that has made all the difference. – Robert Frost
The journey that premature babies embark on is one of its own with many bumps and bends. With big leaps forward and some strides back the strength and determination of the smallest miracles is that of pure will. The Neonatal Intensive Care Unit will ultimately change your life forever. You will develop a profound perspective for the value of life after having watched your child, or children, fight for survival. Never lose hope… Miracles Happen Every Day.
August 24, 2014 should have been Kadyn’s 9 month milestone; instead, we are celebrating his first year of life, three months too soon... Kadyn was born on a Saturday, after just 28 weeks of pregnancy. At 20 weeks of pregnancy my waters broke unexpectedly with no medical reason. PPROM, Preterm Premature Rupture of Membranes, occurs when the membrane sac holding your baby and the amniotic fluid breaks open before you’re actually in labor. PPROM is a rare condition that affects less than 3% of pregnancies and is the cause of approximately one third of preterm deliveries. In most cases the labor process begins within one week of the rupture.
As we sat that night in the hospital room uncontrollably crying because we thought the end was near Kadyn’s heart beat was ever so strong, 144, and I could still feel every movement and kick. The doctors gave Kadyn a zero percent chance of survival and urged me to terminate the pregnancy. Babies are not considered medically viable until 24 weeks gestation, the earliest a baby can be born and survive with medical intervention. My husband and I we’re faced with a life altering decision as the doctors advised us of the increased number of perinatal and neonatal complications that could arise to include: malpresentation, cord compression, necrotizing enterocolitis, neurologic impairment, intraventricular hemorrhage, respiratory distress syndrome, chronic lung disease, and the list went on and on. Against medical advice, I chose to believe in my baby and myself. Together with sheer will and determination we fought for survival and viability. After 8 weeks of strict hospital bed rest and less than one centimeter of measurable amniotic fluid at any given time, our little fighter made his debut. Born blue and in need of immediate resuscitation, Kadyn had an Apgar score of less than 1. The medical team at Winnie Palmer Hospital stabilized him enough for transport and rushed him upstairs to the neonatal intensive care unit where he spent his first 111 days of life… We spent the first 111 days of Kadyn’s life by his side hoping and praying each and every day. Mostly we prayed for his continued strength and for his survival. Born with respiratory distress syndrome, severe bronchopulmonary dysplasia, patent ductus arteriosus, retinopathy of prematurity, gastroesophageal reflux disease and in the weeks to follow sepsis, Statistics were against us but Kadyn was already beating the odds; He was alive and here. We decided on the name Kadyn because it means fighter; that is exactly what he is. After a successful complete blood transfusion using daddy’s blood, Kadyn began meeting medical milestones with leaps and bounds. Although sometimes it felt like three steps forward and five steps back, as does any NICU rollercoaster ride, his lungs were improving and his ventilator settings were being reduced. Kadyn was on the slow road to recovery. 111 days later we were able to bring our precious gift home on oxygen and a pulse oximeter… After five months home on oxygen Kadyn’s lungs were strong enough to discontinue using it…
PPROM is a rare condition with many uncertainties. Whether a victim of PPROM or another devastating condition, in every state, every hospital, there are women lying in their bed, home or hospital, fighting to keep their baby safely inside the womb. To each and every one of you remarkable ladies… Remember with every ounce of your being… You ARE strong. You will get through this. You’re facing things that the average parent doesn’t even want to imagine, and you’re dealing with it.
“The longer you have to wait for something, the more you will appreciate it when it finally arrives. The harder you have to fight for something, the more priceless it will become once you achieve it. And the more pain you have to endure on your journey, the sweeter the arrival at your destination. All good things are worth waiting for and worth fighting for.” - Susan Gale
Integumentary Disorders - Brooklyn
Premature Birth - Jeremee & Kacee
On May 14, 2012, at 25 weeks gestation our two sweet babies were diagnosed with stage 4 TTTS. They were given a 10% chance of living, and would probably not survive another 24-48 hours. Our only option and chance of saving them was to opt for a placenta laser ablation surgery, and the only Dr. That our drs had a track record with was Dr. Martin Walker, in Seattle, WA. So we flew from Denver to Seattle the evening of May 14th. We met with Dr. Walker the morning of the 15th and after a very detailed ultrasound he determined that we were good candidates for this procedure that was to be performed inutero. The latest gestational age they could perform this procedure is 26 weeks.....we were at 25 wks 5 days.......
So on the afternoon of May 15th we were faced with one of the most intense moments of our lives. We underwent this most fragile ablation surgery to close off the shared blood vessels in the placenta that was my two babies lifeline. After a devastating drop in one of the baby's heart rates we almost had to deliver right then, but thankfully his heart rate came back up and remained stable throughout the rest of the procedure. We spent the rest of the day and that night in the hospital. After the ultrasound the morning of the 16th showed some improvement in each baby we were released to go home. We flew back to Denver on May 17th where we stayed the night before travelling home to Flagler, CO, which is two hours from Denver.
I wasn't feeling too well, but going through what I had that was to be somewhat expected. We decided it would be a good idea to go have the babies monitored for a while before we made the long trip home. As soon as we showed up on the labor&delivery floor at Presbyterian/ St. Luke's Medical Center the nurses could tell something wasn't right. I had developed extreme swelling, pain in my upper abdomen, and headaches that I could not get rid of. They put the monitors on to check the babies and did some blood work on me. In the mean time the medication I was taking to prevent contractions was not really working anymore. And to make matters worse my blood work came back with bad news.....I had developed an intense onset of HELLP Syndrome. My platelets were extremely low and my liver enzymes were elevated. They called my Dr (Dr. David Forschner) to deliver the devastating news.....in order to save me they had to deliver our two babies right away..... We were reassured that we had done all that we could to help our babies and that there was nothing we could have done to prevent this awful sickness from taking over my body. We had 8 other kids at home that still needed their Mom too.
At 7:30 p.m., on May 18th, at Presbyterian/St. Lukes Medical Center in Denver, Colorado, two very tiny identical baby boys had to be brought into this world 14 weeks too early. Jeremee Eugene Santala weighed 2 lbs 1/2 oz, the donor twin and Kacee Ray Santala weighed 2lbs 12oz, the recipient twin. This was the beginning of one of the most emotional and terrifying journeys of our lives. While I was discharged 5 days later, for the next four months this NICU is what our babies would call home, the best place for them at this time of their fragile little lives.
Both babies were fighters from the start. Both babies faced the normal preemie challenges of cardiomyopathy, RDS, apnea, jaundice, R.O.P. of the eyes, chronic lung disease, high risk for intra ventricular hemmorhage and White Matter Disease, and the list goes on. Kacee was a little bit stronger than Jeremee.....he still fought and struggled, but was able to overcome some of the challenges easier that they were both given. While in the intensive care unit of the NICU Jeremee had become sicker and had to have surgery to close his PDA vessel by his heart and received several blood transfusions. He had also developed two hernias that could not be repaired until he was healthier and stronger and his ROP had reached stage 3.
After 34 days in the intensive care unit both of our babies were finally transferred to the graduate NICU. There Kacee would spend 50 more days growing and becoming ready to come home. Jeremee was faced with two more blood transfusions, surgery to repair two hernias, of which one was so bad that they had to go back in and repair it a different way because it did not hold. But finally, after 75 more days Jeremee was released to come home.
Both babies came home on oxygen. And were on it 24/7 for several months; Jeremee much longer than Kacee. Both boys' ROP in both boys' eyes completely reversed itself and that is required are yearly checkups now. Jeremee has a small stigmatism that is being watched carefully. They have both developed mentally at normal levels. Jeremee is a just a few pounds smaller and a couple inches shorter that Kacee, but that does not stunt his spirit! We are so completely blessed by where our journey has brought us to today. Our 119 days in the NICU brought us so close to several nurses and doctors. They have become a special part of our lives. What a challenge those four months were to our family, our other eight kids, and living two hours away from our two precious sons...... We have no doubt that our babies are complete miracles from God...they all are, we were just given the opportunity to witness these miracles firsthand. God has Blessed our doctors and nurses with knowledge, love, and tenderness and for this we will always be greatful! Today by God's mercy and grace, our boys are healthy, very active two-yr olds!!