An estimated 15 million babies are born too early every year. That is more than 1 in 10 babies. Approximately 1 million children die each year due to complications of preterm birth (1). Many survivors face a lifetime of disability, including learning disabilities and visual and hearing problems.
In a January 2007 through December 2012 analysis, they discovered that NICU admission rates for all birth weight categories rose. The total increase went from 64 to 77.9 per 1,000 live births. Interestingly, almost 50% of babies being brought into the unit by 2012 were of normal birth-weight or born at 37 weeks or later and considered full-term.
Below are stories from mama’s on how the NICU and premature birth changed them, their marriages and their families as a whole
“During a routine check-up at 26 weeks they found I had high blood pressure (gestational hypertension). Two weeks later, I’m in the hospital on bed rest due to the high blood pressure and being told “we’ll try to make it to 37 weeks, hopefully 34 but more than likely before 30 weeks we’ll deliver”. After 5 days of monitoring and bed rest and being hopeful that we would keep her in longer, I had an off day asked the nurse to do my blood work. Turns out my gestational hypertension turned to pre-eclampsia which turned to class I HELLP syndrome in the matter of 6 hours. My liver was failing, my platelets we’re dropping and it was time to deliver. They started the induction which lead to 18 hours of labor, a failed induction and an emergency c-section under general anesthesia. On September 8th at 10:38PM, our sweet baby girl Lucia Grey was born 29+4 at 2lbs 6oz. After 24 hours I was able to meet the love of my life and 3 days later hold my entire world for the first time. We spent 66 roller coaster days in the NICU. We had the highest of highs and the lowest of lows those 66 days. The NICU has changed who we are as people and us as a couple. I have never appreciated my husband or my life more than I do now.“
Here’s the full story in case anyone is interested!
https://docs.google.com/document/d/1NECyshK-r7nVlJUMlVtTJriuIsrnEe3nnVD9s_8lFQY
- Emily Lovell
“My son is a pprom baby, although I was lucky enough to keep him in 3.5 weeks, he spent 158 days, in 3 hospitals. Had a PDA ligation, trach, gtube, hernia repair. It has changed my perspective on the things that really matter, and the things that in time will not mean anything. I feel like the thing alot of people fail to realize, is that the NICU life may end, but prematurity itself is not gone once they leave the NICU. There are therapies, milestones that need to be met, and struggles that still exist. Our marriage has taken a back burner for the constant care needed for our son and the lack of having a support system that can give us a break together. I struggle with overwhelming guilt and heart break, I'll never get to have my baby wire free as a baby, of living in fear of illness and the effect it could have on his progress. I feel like I've been robbed of becoming a mother and instead forced to be a doctor, nurse, RT, ST, and OT.”
- Ashlee Colley
“My triplets did 42, 56 and 57 days in the NICU. It was the hardest thing I have even done! It was hard on my marriage because prior I was impatient for 3 weeks and we have 2 older children. They were healthy and considered growers and feeders but it was still scary and everyday was a challenge!”
- Bobi Short
“When our family moved to Spanish Fort, Alabama in the summer of 2016 for my husband’s job we had no idea that we were moving about 20 minutes away from one of the best NICUs in the country. This is something we might have never known, if it weren’t for my water breaking at only 22 weeks pregnant.
After I was diagnosed with PPROM while on a beach trip, I was rushed by ambulance to USA Children’s & Women’s hospital. I was immediately admitted, given steroids for our baby’s lungs, IV antibiotics to lessen the risk of infection, and magnesium to help develop his nervous system. I took for granted that this was the same standard of care that anyone with PPROM would receive at any hospital. Later, while on bed rest in the hospital, I joined several PPROM support groups. It was then I learned that most hospitals in the US will not even admit before 24 weeks. Most will not offer steroids or magnesium. Some women even have to fight to receive oral antibiotics. In some other countries, I have learned that they do not consider a baby viable until 28 weeks! Thinking about that feels inconceivable to me, as I ended up going into spontaneous labor at 26 weeks gestation. My son, Trenton Jacob Hyde, was born on July 21 weighing only 2 lbs 2 oz. Miraculously, he never had to be intubated. He spent most of his time in the NICU on CPAP, then progressed to room air through a nasal cannula. After 83 days in the NICU for him and 112 consecutive days spent at the hospital for us, we brought our miracle baby home. He is now off oxygen and weighing in at a happy and chunky 14 pounds at 7 months old (4 months corrected.) I now know that USA Children’s & Women’s hospital boasts a 70% survival rate for 22 weekers, compared to only 23% nationally. They have saved babies as early as 21 weeks weighing as little as 9 ounces. They are proving that there is always hope and that these little miracles can not only survive, but thrive, when given the chance.”
- Amy Hyde
“Our 6 month (177)day NICU sick kids stay:
Our story started off with finding out our baby stopped growing at about 20 weeks. A high blood number came back that most people ignore, and the doctors were glad i decided to do this blood work as it also spots any placenta issues. We started havung weekly appointments. Week after week they were surprised she was still kicking and had a heart beat because the dopplers were showing very low flow. On valentines day 2017 we were told to prepare for her passing as she wouldn't make it another few days. We were 27 weeks and she was not “viable weight” only weighing 470 grams. We talked to many drs. And nicu nurses at Mount Sinai and Sick Kids who told us they hadn't had babies that small and were advised against giving her a shot because she was too small for their machines. We had grievance counselling. And went home. My baby was still kicking a few days later and on the morning of February 17 my husband said “please let’s go check on her at the dr. I have to see her on the ultrasound “. So we went. Thank goodness we went super early and we went straight in. I was scares to have a c section as the one dr. Scared me into thinking it will be very dangerous. Thank GOD we had another dr. That day who eased those worries and said no it would be a normal c section. He calmed us. He left the room and my husband told me we had to have her. He saw signs. He said her fave number would be 7 or 17. It was the 17th. He saw 7s all day. They wanted me to be monitored at least 12 hrs to get the 2 steroid shots but as soon as i was hooked up i had to have her not even an hr later. We had her and she was on the 7th floor of NICU in room 77. We were in for a ride with a very fragile babe. Who ended up needing a pda surgery but was to fragile and small after sick kids uncovered multiple fractures over her body and she had severe osteopenia of preematurity. Finally had surgery at about 3 months. She was on and off of the vent during our stay. We had so many scares. (Our blog can go into everything. We had so many scares and set backs. Too many to post here. We will say it was a roller coaster). What we went through I wouldn't wish it on my worst enemy. But we came home at 6 months with a feeding tube and oxygen. Now my baby is 2!!! She beat ALL the odds. She is our hero. She brought my family closer together especially my husband and i. He was my rock and helped me through the worst of days. I did become more crazy with anxiety and germaphobia (working on it) but our family at least understands. We went through the toughest time in our lives and it has only made us stronger as a couple and a family.“ https://arabellasodyssey.blogspot.com/?m=1
- Kiera Chechlacz
“On September 6, 2018 my water broke at home at 10:45am in my home town of Chatham. I was only 25 weeks pregnant and I was having contractions really bad so I called 911. I arrived at the hospital and at 11:35 Lincoln was born. WOW, that was scary! I just had my little 1lb 13 oz baby and didn’t know what was going to happen. My midwife explained that they had to intubate him and that a team from London was going to come get him. Lincoln was very stable and I got to see him before he left for about 2 hours. I was told that I had to stay in Chatham hospital the night, so London came and packed him up. They asked if I wanted to say bye or have good bye photos and I said no crying. They then wheeled my sweet baby away and I couldn’t go. The next morning I was able to go up and see him. He was doing so well. We found out he had two brain bleeds one on each side. One of his bleeds were a grade 1-2 and the other was a grade 4. I was really upset and wasn’t sure what was going to happen. They kept an eye on them and nothing ever had to happen they resolved themselves. Yay! At about 28 weeks Lincoln had a big bleed. He puked up 30ml of blood at once. They found out his feeding tube was to deep and when they pulled it he puked 20ml more. The cause was Ibuprofen that he was given to close his PDA and his stomach didn’t like the feeding tube in there. After that everything was up from there! Lincoln self extubated twice. He went from NIPPV to CPAP to high flow then low flow. Finally he was breathing on his own. We got sent back to Chatham at 38+6 and the next day we went home. We spent a total of 98 days in the nicu. Lincoln is now he is now 11lbs 4.5oz.“
- Karlee Tye
“My pregnancy was normal until July 4th, 2018. That day, I couldn’t even hold down water. We went to L&D thinking I was just dehydrated. Once there, my blood work revealed I had rapidly developed HELLP Syndrome (extreme preeclampsia). I was rushed to the local Level 3 NICU because I was only 22 weeks and 5 days along. Up until the transfer, I thought I was about to lose my pregnancy. However, the NICU intervened and saved all three of our lives. We spent 178 days in the NICU. My sweet Jesse developed an extremely rare fungal infection that delayed him receiving steroid shots to get off the ventilator and spent 48 hours on the oscillator. Sweet Scarlett caught MRSA in her blood. Once we were over those hurdles, they both caught RSV which delayed feeding and therefore discharge, so we made the call to have g-tubes placed and we’ve been home since December 28! We are so grateful to have our children here and have learned patience and a love that we never knew was possible!”
- Rachel Hadley
“My story is a little different — Amelia was born full term but through an unexpected heart issue & the doctors not wanting to listen to me, I had a NICU team delivery & Amelia made 2 trips to the NICU after she was born. I had a super easy pregnancy until week 34 when an irregular heartbeat was noticed. I was sent to a high risk doctor for an ultrasound & evaluation. The Dr said her heart should correct itself & sent me back to my regular doctor. I told THREE different doctors that she was measuring ahead in size. I was told because my stomach measurement was fine they weren’t worried & the ultrasound was probably just “off”. Well, a day shy of 38 weeks (what I believed was 40), I sat up in bed at 7 am & felt the tiniest amount of fluid. I was pretty sure my water broke even though it wasn’t a huge gush like they said it would be so we headed to the hospital. I wasn’t dilated but my water did break. They did a few things but everything was progressing slowly. Long story short, I didn’t have my baby until 43 hours after my water broke (Sunday at 2 am). I pressed the doctor because I heard of the infection risk after 24 hours, but they weren’t worried. About an hour before my daughter was born, I had a temperature of 101 or 102-it meant I had a shared placental infection with my daughter. Due to this & the fact she still had an irregular heartbeat, the NICU team was present for delivery. They stood quietly in the corner waiting for her. She came out HUGE. 9 pounds 12 ounces! She looked so swollen. And she wouldn’t cry. Finally after assessing her for a while they decided she didn’t need to go to the NICU yet. Her temp was 99.9, if it had been 100 she would’ve gone to the NICU. They would look at her heart later. We get to Mother/Baby & I am told because she is “unexpectedly large” (um? I told you?), she had to have blood sugars tests before she ate every time. Well, she failed & had to go to the NICU for testing & to be monitored. We weren’t able to go with her & it was so heart breaking knowing our less than 24 hour baby was away from us getting drip fed (& it wasn’t my milk that I so desperately wanted her to have) & being pricked. A few hours later & she was back with us. The pediatrician made their rounds & heard a suspected PAC & a murmur in Amelias heart. Again, she was taken without us, to the NICU for testing. The worry we felt at delivery knowing she had an infection & a wonky heart beat, the worry when no one would answer me when I asked is she ok because she didn’t cry, the worry that she failed a blood sugar test, the worry about her size (she had to wear a size 1 diaper at birth! But she lost weight quickly & was extremely slow to gain weight & we had to do weekly weight checks), the worry of her going to the NICU twice without us was hard for us. We wanted so badly to be parents, and loved this little girl so much already & knowing there were complications takes away a lot of that joy that should be felt. I compare it to the first time I was pregnant- we were over the moon excited. I have never been so happy as I was at that time. That pregnancy ended fairly quickly. The next pregnancy we were happy but it wasn’t the same-there was that worry that something would be wrong. I finally allowed myself to be happy & came in for a second ultrasound & there was no longer a heart beat- this was 12/20 & we were going to share the news with our families on 12/25. We had all kinds of wrapped gifts for them. It took over a year to get pregnant with Amelia & I was afraid the whole pregnancy. Her delivery & the few days after we’re scary. 2 of the issues-her weight & her infection-wouldn’t have been an issue if the doctors had taken me seriously.
We also had a CF scare after she was born. The over the moon joy was once again over shadowed with worry. She still came home almost 72 hours later.
She’s a healthy & feisty 5 month old now. She has PAC’s & PJC’s-both a type of irregular heartbeat. The murmur healed but the irregular beats did not ever leave. For now she is okay but it’s something we will monitor as she gets older. I try not to worry & just let it be in Gods hands.
“My pregnancy with my twins was very boring (which we all know is a good thing!) until about 31 weeks. We then learned that our baby A, Christopher, would be born with multiple heart defects. After a whirlwind of cardiologist and high risk appointments, we had a plan in place. Unfortunately this plan included delivering our babies at a hospital 2 hours from home because we knew Chris would require a higher level NICU stay. After a preterm labor scare, we packed our bags and moved into a hotel to wait on our babies to come. It was winter and since my previous labors had been quite short, our doctors didn’t feel comfortable with us being so far away. This was the start of the struggle, as at the time, we had 2 other children, ages 6 and 2, who had never spent more than a day or so away from us.
We ended up carrying to term (yay!) and delivered two chunky babies at 37 weeks and 2 days. Christopher was 6lbs and 5oz and Claire was 6lbs and 15oz. They were born 15 minutes apart in the early morning hours of January 12, 2018. I got to have Chris just long enough to kiss him goodbye and get a single picture of him and his sister before he was whisked off to the NICU. Out of 4 babies, he was my first to have any NICU time, so I was completely clueless as to what to expect. My husband went with him while they did the initial assessment and got him hooked up to all of the monitors. I wasn’t able to see him until hours later as I had Claire to look after and wasn’t able to walk due to my epidural.
After 2 days, Claire and I were discharged, but Chris had to stay. We checked into a hotel a couple blocks from the hospital and I walked back and forth every 1.5 hours to try to nurse both babies. We also had our older children come up to visit everyday. The days ran together. I honestly look back and can’t tell one day from the next. My life was a blur of handwashing, skin to skin, constant nursing, wires and monitors, walking through the snow in slippers since my feet were too swollen for sneakers, and doctors who couldn’t give me any solid answers on what was happening to my baby. Chris had daily echos, blood work, and cardiology exams, but we still didn’t know if his heart was going to handle the work of sustaining his body on its own. He had also developed jaundice. Every morning was “if this this and this happen, he could go home today!” and every afternoon was “well, it won’t be today for this new reason”. It was draining. As a hormonal mom of newborn twins living in a hotel and hospital with 2 other kids who didn’t understand what was happening and a husband who didn’t know how to make it better, every moment took courage and strength that I didn’t think I had. But my little boy. He was strong enough for all of us. He taught my husband and I more about being parents than we had learned in the 6 years before him. He taught us unconditional patience and faith. He taught us to slow down and appreciate the moment while still knowing that this would all be temporary. My husband and I found our groove as parents of 4 in a way we had least expected - in chaos and uncertainty and fear. We were a team and he supported me in every moment. His vulnerability was something I had never seen before but learned to love as we navigated very unfamiliar circumstances in that hospital. Chris did end up needing surgery, which was at another hospital, 2 hours from home in another direction. By the time we were admitted for the additional 10 day stay there, we had mostly mastered living out of a hotel. Chris came through surgery beautifully and we were finally able to get our entire family under 1 roof when the twins were 3 weeks old. Seeing Chris and Claire finally back together brought me so much joy. Chris continues to teach us about strength and courage everyday and we wouldn’t change our experience with him for the world! He will likely need other cardiac interventions in the future, but we know we can handle whatever comes our way. The twins just turned 1 and are both beautiful and healthy. Our little heart hero is proof that you don’t have to be big to be strong!“
- Nicole Marvin
“On Dec 12th, 2017, days before my missed period I got the faintest positive. Over the next few days they continued to get darker. I waited TWELVE days to surprise my husband on Christmas Eve (when keeping a secret this big, twelve years feels like 12 months!). We were hoping for healthy but secretly hoping for a sweet girl after having 3 boys (biologically, twins and a single). Fast forward, first appointment at "7 weeks". I knew I had ovulated late so I was really 6w3d (measuring 6w2d). The ultrasound tech asked if I had any bleeding or cramping. That was an odd question but I chalked it up to measuring "behind". Everything was fine, baby had a heartbeat and we were healthy. Fast forward to 12w6d. I had a bleed that night. It was brown so I was not overly alarmed. I also had an ultrasound scheduled in the morning. The next morning I woke up, went to the rest room and to my surprise I GUSHED brown blood. At this point I was nervous because when I wiped it was red. I called the nurse immediately. She said it maybe due to YOUR hematoma. My hema... what? I had not been told about this hematoma. I get to my appointment. Waiting... impatiently! It is confirmed the hematoma had grown from 0.3cm to 5.9cm. This was just the beginning. Long story short, I bled ALOT my entire pregnancy. I was put on modified bed rest at 13 weeks and total bedrest at 16 weeks. I forgot to mention, at 15 weeks we found out it was a GIRL!! At 18 weeks my hematoma had grown to 17cm!! SEVENTEEN! The MFM said the goal was to get me to 28 weeks but if I had her before viability (24 weeks), she would not be saved. So, I prayed ALOT. At 22w4 days labor started. I did not know it was labor but I began passing clots (I had been passing clits but these were different. Most will tell you clots passing and a hematoma is good. It was NOT!) I started tracking my pressure that grew more intense. We headed to the ER. My daughter was referred to as a "22 weeker" not a baby. If it was not for my OB, I have no idea what the outcome would have been. My MFM denied the steroids Everley needed. My OB said YES! Within a few hours I was given my first steroid shot and magnesium was started. The issue, when I arrived my contractions were a minute apart. Magnesium only slowed them to 2 to 3. By the grace of God, and MANY medications to stop my contractions. 6 days later at 23w4d my water broke and infection set in within hours. On May 3rd, 2018 at 9:25am via c section we welcomed our 1lb 7oz baby girl, BREATHING and crying. My doctor assured me he would do EVERYTHING to save her. She was traumahawked 2 hours away where she stayed for 134 days! Her biggest issue, ROP. If it were not for my doctor, the hospital and MFM would have allowed us comfort care.“
”My son was born at 28 weeks gestation after my water was leaking and he put his foot through the cervix. The NICU changed me because I learned to not expect routine milestones from my baby; I had to be thankful for each step my baby took - having oxygen turned down to grasping a nipple to increasing his feeds. I had to learn to advocate for him - he belonged to me and my husband, NOT the hospital. I could speak up when I did not agree with what was being done for him. It changed my marriage because even though my baby required a lot of care, I still had to make time for my husband, no matter how tired I was - he was feeling ignored. It changed my family because we had to make decisions and make sacrifices because in the winter we could not take our child out in the evening due to his being prone to bouts of bronchitis. My husband and I had to take turns going out or not go at all, depending on his condition. All the sacrifices made were worth it....we have a healthy, adult son, 29 years old and living on his own in Florida.”
My daughter is almost 15, and every other year or so, we still find issues we weren't even aware of before! I have an incompetent cervix and started bleeding at about 5 months,went to get checked out and the midwife said it was probably nothing, but she would be a fool of she didn't check. Thank God she did, she could see the amniotic sac sticking out of my cervix! A few days later, they sewed me up. I was on strict bed rest for 3 weeks, got the steroid injections and within days, my water broke, but held her in another 3 days! She was born at 25 weeks 1 day at 1lb 8 oz. 12 in. Long (on April fools day!!) (We always joke about how she fooled us coming so early!!) She had 2 grade 2 brain bleeds, TOO that was treated with laser surgery. A PDA that closed on its own. She came home 3 days before her due date! She has an amazing immune system, she didn't have a single cold till she was 5 and started school, and even now, rarely gets sick! But she does have lots and lots of other issues. I didn't respond before, because I wasn't sure about the effect the nicu had on us as a family, it being so long ago, and I don't know if you have all of the stories you need.
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