Friday, September 6, 2013

Blessings with Brinley

Many thanks to Brinley's mom, Michele, for sharing her story...

I find Brinley's story hard for me to write. It's been nearly 20 months since her traumatic birth. Around Christmas 2011, I wasn't feeling quite right. I felt a heaviness in my pelvic region. I suspected some fluid leaking, but I figured it was my imagination because it only happened when I got up in the morning. After eight other babies, I should know if something was going to happen.

The month before, I read the book A Love That Multiplies, by Michelle Duggar. She wrote several chapters about the pre-term birth of her daughter Josie at 25 weeks gestation and described their NICU experience. I had no idea what that book would prepare me for. I remember thinking, “I couldn’t handle that. It would be so scary!” Little did I know that I would deliver my precious baby at 24 weeks, one gestational week earlier than Michelle delivered Josie.

I called labor and delivery on a Sunday night to explain my situation. They told me that usually not much is done until 24 weeks, and that, because I was 21 weeks along, I could see my midwife in the morning. The next morning, I called my midwife, but was unable to see her until Thursday afternoon. I laid low and stayed off my feet until then. At my appointment, after telling my midwife about my issue, she took a look and then said, “Michele, you are no longer my patient. You are now under the care of a doctor. You are 4 cm. dilated and have a bulging bag of waters!”

My husband quickly joined me, and we were admitted to the hospital in La Crosse, Wis. The medical team did a lot of looking and testing for possible leaks and informed us that the results were positive for an early delivery. The team also noticed that our baby was showing a two-vessel umbilical cord. The medical team said that, because of my rare blood condition, if I started bleeding, they would not have enough blood available to save me. For these reasons, and considering that one of our other children has a severe heart defect, they decided to send me by ambulance to Mayo Clinic in Rochester, Minn.  

When I was examined at the Mayo Clinic, the medical team thought they found a small leak too. I had an ultrasound to check for other possible problems, but none were found. They started me on P17 shots and sent me home. The doctor didn’t think bed rest would help nor hurt. I disagreed and stayed flat down.

After 5 days at home in bed, trying to entertain my other kids and keep home schooling going, I felt an awful pain in my cervix. I was fearful to even use the bathroom. I live 45 minutes from the hospital and had one of my babies 17 minutes after labor. Again, I called labor and delivery and explained what I was feeling. I was shaking like a leaf with fear of what would happen, but went in to be examined. The ultrasound showed that the baby's foot was in the bulging bag. The medical team said I had to stay at the hospital until her birth. As we made it past weeks 21, 22, and 23, I was hoping she would reach full term.

Then, on day 3 of week 24, as I was lying in bed, I realized I needed to use the bathroom. When I called the nurse to help me get the pumps off my feet, WHOOSH, my water ruptured. I called for help, and a lot of people came running in. I was taken to a delivery room where they put in large lines and started magnesium sulphate, fluids, and antibiotics. I was so afraid and so shocked; I just prayed. The nurses were ordered to keep the baby on a 24-hour monitor and had to take turns because the normal monitor didn’t pick up her heartbeat. So they sat by my side faithfully keeping her heartbeat. Day 4 passed, and then early on day 5 of week 24, I developed a fever. I started contracting on my own. The medical team called my husband and said, “We won’t try to stop it.” I had a chorio amniotic infection.

After a few hours of labor, the medical team started Pitocin, and I delivered Brinley just after 12:00 p.m. I was shaking under my blanket, and our heart rates matched at 160 bpm! The neonatologist said that, if she comes out pink and moving, it’s a good sign, but if she is gray and limp, it’s not good. Many people were around us, and the doctor quickly handed my pink moving tiny baby girl over to get steroids and for intubation. This was just the beginning of our NICU journey.


Brinley Grace was here. I didn't see her for about 6 hours so that they could stabilize her uplines and settle her in her isolette. My first glance at her took my breath away. I was in utter shock at how small she was at 1 lb., 7 oz., and 12 inches long. She was perfectly formed, and her eyes were fused shut like a newborn kitten. This was a whole new world to me. I had never seen such a tiny baby before. She looked like a baby bird. Her skin was so thin and see-through. She had tiny fingernails and a little bit of dark hair on her head. I was in awe at the sight of her. She had a “honeymoon” period, as many preemies do, and was on 21% oxygen but with her two vessel cord, the doctor needed a better line to feed her and take blood. He called in a surgeon who placed a line in the jugular vein in her neck. 

The next day, on her fifth day of life, she became very sick and needed more oxygen. The doctor asked us if we wanted to send her to Mayo by helicopter to get her on a better ventilator. We said “Yes! We will do anything to save her.” 

As we arrived in Rochester, we found out that the neck line broke into her lung. They extracted 3 tablespoons of total parenteral nutrition (TPN) out of her tiny lung and had her settled on a vent. We stayed with Brinley in this first room in the NICU for her first 8 weeks. She failed extubation seven times and coded seven times. I saw three of the codes, and I just wanted to hide. I was scared out of my wits. I felt like both running away and picking her up to help her all at once.

Brinley had a lot of problems with her lungs and, therefore, was bagged often. She was the queen of spells. I never thought she would outgrow it. She had scopes to see the damage the tube did in her throat. She had 16 blood transfusions. She developed Retinopathy of prematurity (ROP) and needed laser eye surgery on both eyes. Brinley developed medical necrotizing enterocolitis (NEC) twice and had problems with extremely low blood pressure, where the doctor sat by her bedside for two nights in a row; he said even he was scared for Brinley. Hindsight is 20/20!

My tiny girl grew very slowly, but she was a fighter. Brinley had so many people praying for her, which I believe was her best medicine. We had a lot of hard days and a lot of good ones and boring ones too, where there was no drama. I tried to bloom where I was planted in the NICU without my family. The kids were sick, and because I have a large family, they couldn’t all stay at the Ronald McDonald House with me. 

After 151 days, exactly 5 months after she was born, we packed up Brinley and took her home. I was thankful to all her doctors, nurses and respiratory therapists for saving our beautiful baby. I met a lot of new friends and learned more about life. I shared tears and laughs with my new friends and was blessed to walk away with our baby. I mourned with my friends who weren’t so blessed. I learned more about my faith in God, my trust in strangers and about me.

When Brinley came home, we still had monitors and oxygen to cope with. We were fortunate that she didn’t need too many medications. Home was a transition for all of us. After nearly 6 months away from home, my family had a routine, and I had to jump back in with a needy baby. A lot of things were different, including sleep or lack of it in my case. Before Brinley arrived in our lives, trying to run our home smoothly came easy for me. I had pride and found out I needed a good case of preemie baby to make me realize I couldn’t do this without help. My older kids and husband were amazing through it all! I am so thankful for their devotion and love.

Now 19 months later, I'm having a normal life again. Belonging to support groups online and reaching out to other new preemie families has helped me a ton by giving back. Our Miracle Babies has been a godsend. I’m still connected to the moms I met in both NICUs. In fact, my older daughter met the love of her life in the NICU. He is the uncle of one of my friends who had a 25-week-old preemie. There are silver linings. We don't always see them at the time, but they are there.

Brinley is doing remarkably well for how sick she was and for how long she was in the NICU. She is off oxygen, is now walking, and can even say a few words. Although her weight gain is still slow, she eats well and is healthy and stable. She was 14 lbs, 4 oz. as of September 1, 2013. She recently was diagnosed with transient hypothyroidism but is handling the medication well.


In all, I’m thankful, at peace, and blessed beyond measure. We give the glory to Jesus for Brinley’s life and knowing he knit her together in my womb. She has truly exceeded all our expectations. I hope her story helps someone else see that they are not alone on this journey. We are surrounded by other families who have endured the NICU experience.



Friday, May 31, 2013

Rainn from Heaven

A special thank you to Bianca for sharing her story ...

My husband Mike and I found out we were pregnant on February 7, 2011. We had been trying for over six months and were excited to be pregnant. That April, we had our first sonogram at Mayo Clinic Family Medicine and saw our baby for the first time. Although we planned to wait until I was 18 weeks to schedule a formal ultrasound, the doctor’s office called the next day to say they need to do a formal ultrasound sooner to find out the due date.

I went in the following week for the formal ultrasound, where we learned our due date was October 22. The doctor said the baby was 11 weeks and 3 days along, and everything looked perfect. We didn’t have to return until we were at 18 weeks.
For our 18-week appointment, our baby was 17 weeks and 3 days, but was measuring at only 15 weeks old and was over two weeks behind. The technicians weren’t going to check the sex at first because they didn’t think they could tell considering the baby’s size, but after a couple minutes, they said the baby was a girl. Based on one picture, we were told our child had central face hypoplasia. The docter then entered the sonogram room and insisted that I do an amniocentesis (amnio) and consider terminating the pregnancy because babies who fall behind this early usually don’t have a good quality of life.
Then we were then moved to a doctor’s office where I met with my doctor. He said if his daughter were in this situation, he would tell her to do the test. I didn’t want to risk the baby’s life especially if the baby was already having problems. I said “no” to the amnio and to terminating the pregnancy. The doctor told me that we would have to wait another two weeks to see how the baby was growing and that I would be referred to a genetics or high-risk doctor.
Those two weeks were hell for Mike and me. We had no idea what was to come or if our child would survive.
At the next scan, we received some good news. The baby had grown a little more but was still behind. The next ultrasound showed that the baby did not have central face hypoplasia. We also checked the sex, and again, they called the baby a girl. During this appointment, we met Dr. Norman Davies. He didn’t push me to do an amnio like the other two doctors had. As a high-risk doctor, he handled the situation much better than the regular OBs. For the next ten weeks, I came in frequently to do Doppler ultrasounds to check the flow in the cord and in the baby’s arteries and to check for growth scans.
We had good and bad growth scans. In one scan, the baby would show some growth, but in other scans, the baby didn’t show much growth at all. They said we should meet with a neonatologist because, more than likely, the baby would be born early if the baby were to survive the pregnancy. The doctor told us that a 1 lb baby was considered viable, but he wasn’t sure if we would get that far.
We went in for a scan around 22 weeks, and our baby weighed around 10 oz. when the baby should have weighed one pound. We came back two weeks later, and the baby weighed 14 oz. Then, at about 26 weeks, our baby had gained the crucial 6 oz. that would save the baby’s life and push the baby into viability. The baby was about the size of 22-23 week old pre-term infant, but at least the baby was viable now. This scan made Mike and me very happy. Little did we know that things would dramatically change that week.
Since our baby was now over a pound, Dr. Davies put me on steroids to help prepare the baby’s lungs in case the baby needed to be delivered early. I had one shot that same day and the other shot the next day. We came back for an appointment three days later, and everything was stable on the Doppler ultrasound.
Three days later, we planned to go to our appointment and then go out to eat afterward, but our plans quickly changed. We went in for our scan, and, by using the Doppler ultrasound, the sonogram technician found that the flow in the cord was reversed. In just three days, the flow in the cord not only stopped but also reversed, so that our baby was not getting nutrition from the placenta. The sonogram technician looked at me and said the flow had reversed but the baby passed the biophysical profile. Soon after, Dr. Davies came into the room to read the Doppler ultrasound. He hoped he wasn’t seeing a reversal, but he was.
I looked at him and asked, “What do we do now?” He said, “The baby has to come out now,” and explained that we would be sent to Labor and Delivery at Methodist Hospital.
In Labor and Delivery, the nursing staff put a monitor on the baby. The baby kept kicking it and moving away from it, which was good news that the baby was still fighting in there. At 1:49 p.m. on July 26, 2011, weighing 1 lb., 4oz. and measuring 12.5 inches long, Thea Marie was born.  Our baby had not grown at all in the last week. Our baby was born at 27 weeks and 3 days, weighing the size of a 22-23 week old pre-term infant.
We were so grateful when our baby came out crying and pink. I got to see the baby before the hospital staff took me to my room. I had never seen anything so tiny; you could see every vein in the baby’s head. After I was sent to my room, a nurse brought the baby to see me. When I called and reached my arm out, my baby reached out for me. It was like my baby knew where I was even though the eyes were fused shut. Then, our baby was transferred to the NICU at St. Mary’s Hospital, while I stayed at Methodist Hospital.
I received a call early the next morning that our baby had coded and had respiratory failure. The NICU staff had to put our baby on an oscillator. The baby’s lungs were too sticky, and the nurses were unsure if our baby would pull through. They gave the baby Dopamine to keep the baby’s blood pressure up. At first, the baby didn’t respond much. When I called back, they said our baby was responding to the medicine, but was critical, and we needed to come over to the NICU. Our baby ended up overcoming this obstacle, but spent a few days on the oscillator and a few more days on the regular vent.

The following Saturday, Mike and I received a call from the NICU at home. The nurse asked us to come to the NICU, but they couldn’t tell us why. When we arrived, the doctor closed the door to the baby’s room. He said the night nurse noticed something strange about our baby. It turned out that our baby was not a girl at all. The night nurse found testicles, but didn’t feel any uterus in the abdomen. Later a urologist came to see us and said this baby appears to be a “boy” with hypospadias, but they didn’t want to tell us that the baby was a boy until the genetic test came back in a few days.
It was a tough and confusing time for Mike and me. Not only was our baby on an oscillator, but the medical team couldn’t tell us its sex. I remember asking how could the staff could miss a set of testicles when he was born. They said the first priority was to keep him alive. Also, he had edema (swelling), and once the edema went away, they clearly saw the testicles. The following Monday afternoon, the test came back, showing that our baby had a Y chromosome and was definitely a boy, not a girl.
Mike broke down. He had his heart set on having a baby girl. But me, I already accepted that we had a baby boy.  It was now time to search for a new name for our baby. When were pregnant, we decided on Caleb, but Mike felt that, since our child was such a miracle, Caleb didn’t have any significance. Mike wanted to find a name that meant “miracle.”  We spent some time searching names, but didn’t find many boy names that mean “miracle,” until we stumbled across the name Rainn, which meant abundant blessings from above. It was perfect! We embraced our baby boy.
Rainn would need a series of surgeries to repair the birth defect. The doctors also found that, because Rainn’s urethra was so little and swollen, he had reflux in his kidneys. They put a catheter in him and gave him amoxicillin. Even after the reflux got better, Rainn stayed on it for prophylactic reasons.  He also had type-1 brain bleed, but it resolved itself.
At 29 weeks, Rainn’s eyes opened, and he dropped his mouth in excitement at the first time he saw me. A little over a week after having respiratory failure, Rainn was removed from the ventilator. He was then placed on the C-PAP and did well. He weaned off slowly from the C-PAP over the next month, despite some setbacks that occurred later.
Rainn eventually moved to the feeding and growing room, which we called “the den” because it didn’t have any windows. I didn’t like this room. When the nurses added formula to his milk, Rainn seemed to have a feeding intolerance. One time, when he had a severe intolerance, his leads weren’t reading correctly, and his trap was filling with milk. I thought everything would be fine since the nurse knew about it, so Mike and I went home. Later, a nurse from the NICU called us to say that Rainn had coded during cares. The night nurse said she was in the middle of cares and just finished changing the bad leads when Rainn starting vomiting and stopped breathing to protect his airway. A fellow had to bag and compress him. They thought they would have to intubate Rainn, but right when they were about to, Rainn let out a cough and began to breathe again. Rainn instinctively knew to block off his airway to prevent aspiration into his lungs. It was a blessing in disguise. It took a few days to get Rainn back on feeds after that. I’m amazed that he didn’t get Necrotizing Enterocolitis (NEC). He was backed up for quite some time. This NEC scare would be one of many.
Rainn also had anemia and received many blood transfusions, around 15 of them. Part of the reason he needed so many is because the medical staff kept taking so much blood for genetics testing. After they found the birth defect, we dealt with many genetics and endocrine tests. Rainn also had high blood pressure and low blood sugars, both of which got better.
The doctors eventually found a micro deletion on one of Rainn’s chromosomes. It was nothing serious, but he was missing a few genes out of hundreds and hundreds on one chromosome. The doctors did a fish test on Mike and me to see if it came from one of us. They said they would be more concerned if it was spontaneous than if it came from a parent. It turned out that I also have the same genetic mutation, but they determined it was a benign mutation.  
Next, we learned that Rainn had direct jaundice. He looked an awful green color, and his stool was pale.  With Rainn approaching 2 months old, we had more testing done. He had a HIDA scan done, which came back inconclusive. More blood tests were done to check his levels, which kept going up. He also had an ultrasound to look for his gall bladder, but they couldn’t find it.
The doctors were starting to fear that Rainn could have biliary atresia. To determine whether he did, he needed to have surgery before he had reached two months old. Mike and I tried to put it off pending testing, but in the end, we had to go through with the surgery because Rainn’s bilirubin kept rising. The doctors didn’t know if the two-month age was different for preemies, and they didn’t want to take the chance. If he had biliary atresia, they could do nothing else but for Rainn to have a transplant. Rainn had the surgery, and it turned out that he didn’t have the condition and didn’t need the Kasai procedure.  Unfortunately, the next day, we had another NEC scare, so Rainn stayed on the vent for a couple days after the surgery. 
After the surgery, Rainn was about 33 weeks old and weighed only about 2lb. He was now on ISO  oxygen, and when he wasn’t in the ISO, he only needed a whiff of oxygen. He was already weaned off of the C-PAP and the high flow. Rainn might have had strong lungs, but he never grew well. He was already  on medication for his liver, and now he was undergoing more test for other things even though they were pretty sure it was caused by total parenteral nutrition (TPN). So now Rainn was on amoxicillin, Actigall, Phenobarbital, and an orange fat-soluble vitamin, of which all but the amoxicillin were for the jaundice. Rainn was also tested for Alagille syndrome, which involved collecting a lot of urine and sending it to Ohio for testing. Collecting urine from a boy with hypospadias is difficult for nurses. They used a cotton ball to soak it up and then wrung it out into a vile. Eventually, they collected enough. We had to wait 8 weeks for it to come back, but we might be home by then.
Weighing less than 2.8 lbs (1300 grams), Rainn was then moved out of the isolette into a bassinet because he maintained his own temperature. Rainn was still growing slowly, so now, it was time to start teaching him to eat. When he moved back to the growing and feeding room, I started trying to breastfeed him. We had some good sessions, but Rainn wasn’t gaining weight. Then, I decided to keep fortifying him with bottles, which he started to drink well and was up to 60 percent feeds within a week.
Soon, he had a setback with eating. He began sleeping through feedings and would gag in his tube when he was trying to eat orally. We believed the tube was causing problems. Then one day Rainn pulled out his tube. His nurse put the tube back in, and he pulled it out again. He did this at least three times. His nurse knew he was telling her something. After a few weeks of trying to get him to eat, he finally started take 100 percent of his feeds. That was when we saw the light at the end of the tunnel.
The next day the nurses told us that we were going home in a few days. I couldn’t believe it, especially considering that we hadn’t completed any discharge requirements. Then, Rainn passed his car seat test and took all his feeds when we spent the night in the going-home room. The next morning, which was November 5, 2011, we brought Rainn home.  That day, he was 42 weeks GA and weighed only 3 lbs., 13oz. He was one of the smallest babies ever discharged from the NICU at St. Mary’s Hospital. He was so tiny that we put washcloths in his car seat so he could fit snuggly and safely in it. Although we brought Rainn home with several medications, he didn’t require any respiratory support.
When we brought Rainn home, we were very nervous. For a while, he slept in his bassinet next our bed. In his milk, we mixed in his three medicines, a vitamin, and 24 calories of fortifier. He started to gain weight really well at home and ate all the time. His stools started to look normal, and his liver began to clean out. We could see the jaundice leaving his skin.
That December, we took him to a series of appointments with the GI, Genetics, Endocrine, and Urology departments at Mayo Clinic. These appointments were in addition to his regular visits at community pediatrics. We were running to appointments a lot, but Rainn was finally starting to grow and get better. By the time he went into his first NICU follow-up appointment, he had gained a whopping 5 lbs in those three months and weighed 8lbs, 10oz. Rainn also was doing great developmentally, but his brain had grown so fast that he split a suture in his head just in trying to catch up in growing. Rainn was tested for jaundice, which turned out was now in the normal range. The GI doctors started to wean Rainn of his medications, and the Alagille test also came back negative. He also had a voiding cystourethrogram (VCUG), which showed that he no longer had reflux in his kidneys and had a typical boy urethra. The doctors took Rainn off amoxicillin. He was now medicine free at this point. He also started sleeping in his crib in his room, which he slept better in than in the bassinet. Things were really looking up!
Soon Rainn started refusing the bottle. He was only eating about 10-12 oz a day, and we were beginning to get confused. After all the struggles, I decided to try and feed him plain breast milk, and it worked! Within a few days, he was working his way back up to a good volume. He had just begun to roll over and become active, so he gained weight slowly again because he was using more calories. At least he was back to eating. I started him on baby food around 4 months adjusted. I looked to see where he was for weight at certain times, but he wasn’t gaining like other kids, partly because of his prematurity.
On July 26, 2012, Rainn turned 1 year old and weighed between 11 and 12lbs. We threw him a rock star party because that is what they called him in the NICU. We gave him a Mohawk and temporary tattoos.
Last year, his doctor in Urology started giving Rainn testosterone shots to prepare him for surgery on the hernia in his testicle that was not fixed during his first surgery when he was in the NICU. Rainn had three shots of testosterone and then had his first hypospadias surgery on January 3, 2013. He is tough because he was up and running the next day. At his appointment in April, the doctor said Rainn was healing well, but his scar tissue needed three more months to heal. We have another urology appointment in July at which time we will probably schedule his second surgery to take place after this summer.
At the time of writing this entry, Rainn weighed 15 lbs., 12.5 oz. and is 30 inches long. He is almost 22 months old, 19 months adjusted. He is tall and thin, but walks well and is doing well developmentally. He eats all table foods and is still taking breast milk, which has helped to keep him pretty healthy. Although he had three colds and the flu the season, he never required hospitalization.  
Rainn is our miracle. He wasn’t supposed to be here but by the grace of God he is.




Thursday, May 23, 2013

Keep the Faith, Never give up Hope, Charity will prevail



Written on April 14th, 2012
 
Thank you to Kristina for bravely being the first to share her "Miracle Baby" story on our website. In her words...

"Our first born daughter was born a healthy 9 ½ pounds and we named her Faith. Before becoming pregnant a second time, we always joked that our next, if a girl, would be named Hope and we then would have a lot of “joy” in the family. With a relatively uncomplicated first pregnancy, I expected to have a similar experience with our second. We never fathomed that we would have to come up with two names and that hope would carry such significance.

We first found out we were having twins at our 9 week appointment. Twins were not a thought in our minds so we were beyond shocked. In fact, the midwife held up two fingers and asked “are you seeing what I am seeing?” We still had no clue what she was talking about. Once we realized what was happening, my husband and I had very different reactions. He giggled and I cried! With a 10 month old at home, I could not imagine how we would manage. So another appointment was scheduled in two weeks and I would be transferred to OB. At home I Googled everything I could about twins. At this point, we did not know if they were identical or fraternal, so I looked at pictures of ultrasounds to try to compare and figure it out. I was pretty sure they were identical so I started gathering information about the different types of identical twins (di-di, mo-di, mo-mo, conjoined) and the many possible complications that naturally occur with identicals. Something that caught my attention was monoamniotic monochorionic (mo-mo) twins and their seemingly poor outcomes. Since only 1-3% of identical twins are mo-mo, I quickly dismissed this as a possibility. Little did I know that in fact, our twins were just that rare.

At 11 weeks, we had another ultrasound. During the ultrasound our hearts stopped as we saw the look on our sonographers face. We looked at the screen and it appeared the babies heads were attached. I immediately asked “are they separate?” and the sonographer replied “I need to find a membrane” rushing out of the room. After coming back in, she tried again, the babies heads moved apart. With a sigh of relief from all of us, the sonographer then set out to find a separating membrane. But no membrane was found. We were the 1-3%. A Maternal Fetal Medicine MD then entered the room and explained to us that we were having monoamniotic-monochorionic twins. In other words, they shared a placenta as well as an amniotic sac. The risk to these twins was cord entanglement and cord compression because they were basically sharing a room; therefore, we were told that they would be delivered by C-section no later than 34 weeks. Because of the risks involved, we were transferred again and now would be overseen by the Maternal Fetal Medicine team. We were scheduled for another appointment in just 2 weeks.

I went back to Google and read the worst of the worst. I read about going inpatient for monitoring at the point of viability (24 weeks) with fetal non stress tests occurring anywhere from 2 times a day to continuous monitoring with strict bed rest. I read about the 50% chance of survival rate and the high chance of disability especially if one twin were to die in utero. I read about the variability of how these twins are managed throughout the country and the world and wondered how our pregnancy would be managed. I immersed myself in any website that provided any information and that was not much. At our 13 week appointment we were told something that set the tone for the entire pregnancy: “You are a ticking time bomb.” I have no control, I am a ticking time bomb, resonated in my head our entire journey.

We continued to have appointments every two weeks with ultrasound. I would hold my breath before every ultrasound and pray that we still had two strong heart beats. I continued to do my own research on mo-mo twins and surrounded myself by success stories. I fell upon a website called monoamniotic.org which provided support for mom-mo moms from all over the world. As 20 weeks neared, we had to make a big decision. We had to decide when I would go inpatient for closer monitoring. Once inpatient, if anything looked liked the babies were showing distress, they would be delivered. We agonized over the statistics and “what ifs” of having twins born as micropreemies, My husband and I ached over what to do. I would be leaving our 13 month old at home during a time that I felt was so important to be around, yet I wanted to give our babies the best chance at survival. Ultimately we let prayer and God guide us through.

At our 25 week appointment I planned to have the first round of steroid injections for their lungs and then be admitted a couple days later, but the babies had a different plan. Up until then, both showed equal growth and no signs of trouble. At this appointment there was a sudden change and now we were dealing with 20% size discordance. This size difference was borderline for a condition called twin to twin transfusion syndrome (TTTS), but because our girls were mo-mo, the likelihood of TTTS was next to nothing. They were instead labeled as having unequal placental sharing without a known cause. Additionally, the smaller baby was showing intermittent diastolic end flow reversals, meaning the blood to the baby was not always going the correct direction. Due to this, I was admitted inpatient immediately where another phase of our journey began.

During my first fetal non stress test (NST) the nurse was unable to locate the babies and I was rushed to labor and delivery within the first few hours of being admitted. Extremely confused and scared I was relieved that they were able to locate the babies via ultrasound. The girls were just tough to find on the NST because they were still so small and they did not stay in one place for very long making it extremely difficult to get a good strip on the NST. I went back to my room and wondered how I was going to keep my sanity going through this everyday. I prayed every night that the babies would show us signs of distress in time. And of course, my biggest fear was not seeing the heart beats. Two more times in the following three weeks, I was rushed to labor and delivery due to heart rate decelerations from Baby A but she always recovered. An additional two other times we planned that we would have a C-section the following day, expecting an increase in the size discordance, but after a growth ultrasound, the girls would prove us wrong. They maintained the 20% size discordance throughout this time. Had it become greater, delivery would have been imminent.

I continued to research prematurity and likelihood of different complications at each week of gestation. I constantly asked as many questions as I could to the MFM doctors as well as the Neonatal doctors because staying informed was the only thing I could do. Due to the multiple scares we had, as well as their size discordance, we decided with the doctors that we would not push it to 34 weeks. Our goal became to make it to 32 weeks. But once again, the babies had a different plan.

On the night of March 14th, I requested that we hold off on my last NST of the day so that I could watch a reality TV finale. I wanted to be able to eat dinner and not stress over the NST strip. I had a wonderfully large late dinner as I was feeling that I had not gained enough weight in the last week. Around 10 pm we started the NST. Baby A showed one minor deceleration which was not unusual by then, so I did not become too worried. Then, the big one happened. Baby A dropped to 60 bpm for over 2 ½ minutes, (In the past, it seemed anything below 100 bpm for greater than 30 seconds was cause for concern.) At this point I was waiting for a nurse to run into my room as had happened with more minor ones in the past, but no one came. I called the nurse and she told me they were watching things closely and the team of doctors had been notified. After what felt like eternity, a resident did come to talk with me and explained they were going to start an IV and do a blood draw. He also stated that the plan was to take me off of the monitors and check back on them in a few hours. I was horrified. Considering this was the worst deceleration we had seen yet, I requested to go on continuous monitoring. I just felt that something was not right. It was agreed, and I was taken to labor and delivery.

Initially the plan was for me to sleep and have the nurses watch over the babies. However, within 5 minutes of transferring, another doctor came into my room and said we needed to deliver. After reviewing all the events that had happened that night, they decided, considering I was 30 weeks, it was time to deliver and not risk anymore. I was petrified. I felt validated that I knew things were not right but horrified that we were actually going to deliver these babies 10 weeks early. I called my husband and my dad who was to go and take care of our oldest daughter as planned. I stalled and asked to wait until my husband could get there, but it eventually came to a point that with continued heart decelerations, we could not wait any longer.

Thankfully my husband made it just in time. At 1:32 am Hope (meaning a virtue of desire and trust) was born weighing 3 pounds 7 ounces and at 1:33am Charity (meaning a virtue of love and kindness) was born weighing 2 pounds 11 ounces. They each gave out a tiny squawk which was reassuring; however, they both ended up requiring intubation. I only saw them for what felt like moments before they were transferred to the NICU. I asked to see the cords expecting to see a mess of knots and tangles as all the pictures on the internet had shown of mo-mo twins. To our amazement, there was not one twist in their cords. That being said, the reason for the size discordance was immediately evident. The cord was inserted into the membrane of the placenta (velamentous insertion). In addition, there was only one cord insertion site that branched off into two cords like a “Y”. One of the cords was thin like a deflated balloon and the other a plump helix. Later we were told that if I had experienced any type of stronger contraction, those cords would have been severed. Our babies were miracles.

In retrospect, Our NICU stay was fairly standard. The stress of the NICU for me was a different kind of stress compared to the pregnancy. During pregnancy, I felt so helpless and without control. After the babies were born, I held onto the one thing I did have control over, establishing a milk supply. We experienced the NICU rollercoaster ride from intubation to blood transfusions to trying to transition from CPAP to high flow nasal canula. We had stubborn PDA’s, blood pressure issues putting one at higher risk for vision impairment, and the common “A’s and B’s.” All of these things were extremely stressful and scary, but with such a supportive family and friends, an amazing NICU staff, and another NICU family who reached out to us, we persevered through it all. Hope and Charity came home 10 days before their due date on Friday the 13th.


Hope
Charity










Becoming a preemie parent has changed my life. Even before they were born, these girls had to fight harder for life than I could have ever imagined. As a preemie parent, I feel I am always waiting for that “ticking time bomb” to explode, although with time, my fears have quieted down. Our girls are now just over a year old. They are thriving and have big appetites. They love to laugh with their older sister and have giggles that resound into ones soul. They bring a joy to our family that I cannot explain, and I am so grateful that God is giving us the opportunity to care for these two amazing miracles. This experience has strengthened my belief in the power of prayer. Our mo-mo twins remind us everyday to Keep the Faith, Never give up Hope, and Charity undoubtedly will prevail." 





 

About the Stories of Our Miracle Babies

 
"Miracle: An extraordinary event manifesting divine intervention in human affairs"*



This blog is a tribute to the miracles that our members have experienced in having an infant or multiple infants born under special medical circumstances. Some babies were born prematurely, some were born with medical complications, some didn't survive the pregnancy, and some were called to be angels too soon. Through this blog, we share our inspiring stories of hope, courage and strength as a way to help connect with other families who are going through similar situations. To those families we say: "You are not alone; we've been there too." 

To learn more about Our Miracle Babies, visit us online at: ourmiraclebabies.com or find us on Facebook.




* Source: Merriam-Webster online dictionary