No one ever expects to give birth prematurely, but it happens quite often with an average of one in eight American moms delivering before their 37th week of pregnancy. Of course, there are varying degrees of preemies; at 37 weeks you’re so close to being full term that you wouldn’t expect too many complications. My story is about my third son Jet Ryder; he was born at 29 weeks. The information provided is from my perspective and what the hospital staff explained to us.
The previous year, May 30, 2014, I had given birth to my second son, Fox Ryder. The pregnancy was perfect and I worked full time right up to the week before I gave birth. We planned to attempt a VBAC, and at 10 centimeters dilated, it was decided that a C-section was required as his heart rate dropped with every contraction. As it turns out, the cord was tightly wrapped around his neck which was stopping him from coming down the birth canal. After being in labor for 12 hours, I was just happy to have him out safely.
I became pregnant again just after I returned to work when Fox was four months old. At about 24 weeks, I started having some very unexpected complications. When I stood up out of bed there was a gush of fluid. I’m convinced it was amniotic fluid, but my doctor didn’t think so. Not long after that, I started spotting and clotting. Several ultrasounds over the next few weeks did not reveal the source of the bleeding.
On May 27th, 2015, I was admitted to the Maternity Ward having contractions. There I was given steroids to help develop the baby’s lungs and magnesium which helps the baby’s nervous system and to try to stop the contractions. I was sent home the next day with progesterone. On the morning of May 29th after having contractions all night, we packed up our almost one-year-old and went back to the hospital. Almost as soon as they put me in a bed, my waters broke and all hell broke loose. By that time it was almost 6.30am and I sent my husband to drop off our almost one-year-old at daycare. Meanwhile, the nurses called my doctor and prepped me for a C-section. My husband didn’t make it back to the hospital in time for the birth as they had me in theater and the baby out before made it back. And now we had Irish twins.
Dad made it back to the hospital as they were taking baby Jet to the NICU. So he was able to walk with him and get Jet’s first photo.
As you can image we were devastated, but no turning back now. We would just have to deal with what was thrown our way. We were very lucky, as at 29 weeks Jet was 4 pounds and strong and relatively healthy at this point.
My mom had booked a flight from Australia to come to the US for Jet’s birth. She obviously didn’t make it in time and had to reschedule her flight and ended up arriving in the US a week after Jet’s birth.
So there is Jet’s birth story.
Leaving the hospital without your baby is a hard thing to do, but I was confident that this was the best place for him, and it would give me the opportunity to recover from surgery.
Dealing with life threatening (NEC) Necrotizing Enterocolitis
My second night home (and after my husband had returned to work – Night shift), I received the dreaded call from the hospital. Baby Jet had blood in his stools. And so another hurdle and another journey begins. Jet had been diagnosed with NEC. I felt so hopeless, I wanted to race into the hospital but I couldn’t drive. I had a one-year-old to look after and then there would be nothing I could do at the hospital. I couldn’t even hold him at that point.
Babies born prematurely are at risk of a number of diseases within the first few weeks of life. One of the most common and very serious is Necrotizing Enterocolitis (NEC). An intestinal disease among preemies. NEC happens when tissue in the small or large intestine is damaged or begins to die off. This causes the intestine to become inflamed or weak, which in turn may cause it to break down causing a hole to develop.
When this happens, the intestine can no longer hold its content, so bacteria and waste products pass through the intestinal wall and enter the baby’s bloodstream or abdomen. This makes a baby very sick and possibly causes a life-threatening infection.
After diagnosis, treatment begins immediately and includes: Temporarily stopping all feedings – My baby was not to be fed for two weeks. Nasogastric drainage is inserting a tube through the nose into the stomach to remove air and fluid from the stomach and intestine. Intravenous fluids and nutrition he was given are what the nurses referred to as baby Gatorade. It was literally fluorescent vitamins and fluid and antibiotics to treat or prevent infection.
Complications of having an IV
IV’s in babies have to be moved every two days as it damages their veins. In the end, all of Jet’s veins had collapsed and they were having a lot of trouble getting IV’s inserted. So eventually they had to use a vein in his head that went directly to his heart. This is a long term option. To do this, they have to shave his head. The first attempt failed and they tried a day later, so poor Jet ended up with his head shaved on both sides. The damaged veins do eventually heal but it takes time.
The babies aren’t given any pain medication when they poke and prod them. They use sugar water as a way to calm them during this type of procedure.
Breastfeed Your Preemie, If You Can
While in the hospital, I had to start pumping so that we could feed baby Jet. Babies born before 32 to 34 weeks are usually too immature to suck from a breast or a bottle. The NICU nurses will feed your milk through a tube inserted into your baby’s nose or mouth.
Another complication is that they use too much energy trying to feed so that they fall asleep and don’t end up eating. It’s a constant battle to try to get them to eat and therefore when Jet was again allowed to have milk, he was fed through a nasal tube. I would try to arrive at the hospital in time for a scheduled feed so that I could either try to breast or bottle feed him before he would be fed via the tube.
I had to pump every three hours. It was no party getting up in the night to pump even though there was no baby to get up to.
Because Jet was not allowed to have any milk, I ended up with a large supply of breastmilk that I froze which was used when I returned to work.
When Jet was again allowed to eat, he was given a combination of Preemie Formula and Breast Milk and when he finally came home, I was advised to give Jet at least one bottle of the formula a day.
Of course, not every mom can provide breast milk for their child and even though it is recommended, you should never feel bad about giving your child formula.
Hold Your Preemie Close
It’s hard to bond with your baby in the NICU especially if they are being treated for complications. But it’s important to try to get as much “skin on skin” or attempt to breastfeed when possible. Sometimes I would just come in and sit and pump in the room. But you need to just do what you can. The hospital where we have had a program where volunteers would come and sit and talk to the preemies. I feel like I didn’t spend enough time there, as I had a one-year-old at home that also required attention. I also felt so hopeless when I was there. Nobody wants to leave their baby.
But wait there’s more… Jaundice
Jet spent two days under ultraviolet light with an eye patch on for Jaundice, which occurs when too much of a natural chemical called Bilirubin builds up in your baby’s body, which turns their skin yellowish. Bilirubin is made during the normal breakdown of old red blood cells. Newborns tend to have higher levels of bilirubin. That’s because they have extra oxygen-carrying red blood cells. But having said that, it is common that preemie babies are born with fewer blood cells than normal. Top that off with taking blood for testing from such a small little person and you end up in a situation where baby needs a transfusion. You guessed it. Jet now also needed not one, but two blood transfusions.
Blood Transfusions, yet another complication
Special blood is required for babies having blood transfusions. Something I have never heard of before going through this with baby Jet. What a scary thought it is that some stranger’s blood is going into my newborn’s body. We were also given the option of supplying our blood for the baby, but the likelihood of our blood being the ‘correct’ blood was low. Here is why:
You may have heard someone say that they donate blood for babies. What does that mean? It means they are CMV negative, that they have not been exposed to the cytomegalovirus or CMV. This is important because, in low birth weight infants, the consequences of such infection may be severe or even fatal.
CMV or Cytomegalovirus is a complex flu-like virus that most adults are exposed to. It’s a double-stranded DNA virus belonging to the herpes virus family and almost everyone is susceptible to it.
Because the immune system in small babies is not fully developed, every precaution must be taken to avoid infection. Scientific studies have shown blood lacking this virus (CMV negative blood) is safer for pediatric patients. Therefore, hospitals prefer to use CMV negative pediatric units to ensure the safety of blood transfusions to newborns.
Help Your Preemie Sleep Right
Sleep apnea, (when a baby stops breathing for 20 seconds or more) is a common condition in preemies. Unlike most newborns, babies in the NICU are positioned on their tummy to help expand their underdeveloped lungs. This is safe in the hospital because preemies are on a breathing monitor and under the supervision of very attentive staff. Jet stopped breathing twice during his stay and I think this plus getting him to a suitable weight prolonged his stay.
Preemies also need to be woken for feeding every few hours. Preterm babies don’t have a lot of reserves and need to eat more often in order to catch up to their full-term babies.
Time to go Home
Most preemies go home on or after their original due date. The average is 36 to 38 weeks, depending on how premature the baby is and their current health. After leaving the NICU, your preemie is still susceptible to viral infections, especially RSV (respiratory syncytial virus), which can lead to breathing problems and even another stint in the hospital. Jet came home after almost a month, so he was a little less than 36 weeks. The frustrating part is no one can tell you for sure when you can take your baby home. They have to be gaining weight rapidly, have passed the apnea testing and complete the car seat test. Not just a hospital check of your car seat, but they had to sit him in the seat and monitor him sitting in the seat to make sure he coped in that position etc.
Long Term Complications
Fortunately, we haven’t seen any long-term effects and Jet is a normal, happy, healthy toddler now who had a bad hair cut for the first 8 months of his life. Unfortunately, that is not always the case and many preemies face challenges throughout their lives. Jet is now almost two and I didn’t actually remember everything we/he went through with him until I sat down to write about it.
Thankfully he will never remember any of the traumatic start to his life.
Our Investment has Paid Off
We invested in an “Angelcare Video and Movement with Sound Monitor” where you place a Movement Sensor Pad under the baby’s mattress. This senses each and every one of your baby’s movements and sounds an alarm if no movement is detected after 20 seconds. We are currently using it with our newborn and it’s pretty amazing. If I forget to turn the sensor alarm off and take her out of the bassinet, the alarm never fails to start.
This was the closet thing I could get to continue monitoring Jet at home, considering he did actually have two episodes of Apnea which delayed his return home. Placing the sensor pad under the mattress is far less invasive than being attached to any wires and more comfortable than having to attach a device to your baby’s foot (which I have seen in recent times).
Just recently and for the first time, we experienced the alarm going off.
One afternoon when my newborn baby daughter was sleeping upstairs and we were working downstairs, the alarm started beeping. I ran very quickly up the stairs and found our precious baby girl was starting to move around and the alarm stopped when I reached her. Maybe the alarm woke her from a deep sleep. Maybe she did stop breathing for a short period, but whatever actually happened I have never been so thankful to have that sensor pad.
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