Meet Rawley William Ambuehl; born at 28 weeks, 6 days, on May 23rd at 6:20 am; 2 pounds, 13 ounces; 14 inches long. He is one month old today!
Rawley’s Birth Story
My water broke on April 3rd, 2012, at 21 weeks, 4 days, and I spent the next 8 weeks on hospital bed rest praying for time so that our baby might be born healthy. Once ruptured, hospitalization until delivery is required because of the risk of infection, abruption, and other forms of distress with the baby. (For more info on the risks after an early rupture, see my previous post about my water breaking at 21 weeks.)
We beat the odds in a big way; I carried much longer than most women do after rupturing so early. We knew all along that I’d require a Cesarean delivery because of my medical history. They also warned us that we’d have very little notice and that it would most likely be an emergent delivery.
They were right. Early in the morning of Tuesday May 22nd, I began having some bleeding again for the 4th time in my pregnancy. After monitoring me for contractions and checking the baby’s heart beat, the OU Children’s Hospital doctors made the decision to move me from the OB Special Care Unit to Labor and Delivery for closer observation. I was contracting regularly and the baby’s heart was decelerating with the contractions.
They had moved me to L and D once before, and I didn’t go into labor. But, for some reason, I suspected that this time the outcome would be different, and I spent a few minutes gathering things, cleaning myself up a bit, and called Nathan to come to the hospital. Nathan came, and spent the day with me watching and waiting. They started me on magnesium IV drip to stave off labor, which made me horribly dizzy to the point of getting sick. Awful stuff. I wasn’t allowed to walk (i.e. catheter) due to the magnesium dizziness, or eat or drink, just in case I was moved to surgery.
All day Tuesday, the doctors kept changing their minds about whether I was headed to delivery.
- At about 5 pm, they said it appeared that my uterus had calmed itself down and labor wasn’t imminent.
- At 11pm Tuesday night, they said I had a 50/50 chance of delivering the next day, but that they were leaning towards moving me back to my former room.
- At 3am, they came in and did an ultrasound, and said they were reassured because the baby looked fine.
- At about 5:45 am, they came in and said “we need to deliver you.” Rawley’s heart rate was decelerating – but now, it was decelerating in between contractions and taking longer to recover. And, it was getting progressively worse.
- By 6am Wednesday morning, I was in the OR getting a spinal. Nathan was on the phone calling our parents as they wheeled me past him into the OR.
Thank God we had made the decision for Nathan to stay at the hospital that night (usually he didn’t during the week). Despite their warnings, the delivery happened even faster than either of us ever imagined.
Once in the OR, the anesthesiologist gave the spinal about 1 minute to start working, but I still had feeling in my abdomen when they checked me. There wasn’t time to wait, so I had to go under general anesthetic and be intubated. Nathan was still on the phone in the hallway, waiting for the nurse to bring him scrubs. No one explained to him that I was intubated and under general anesthetic and therefore he wasn’t allowed in the OR, so he was left wondering why no one came to get him.
Sadly, as a result of the emergency delivery, neither of us saw Rawley enter the world. It was up to a week later that we started to learn details about his arrival. We’ve spoken with one L and D nurse and one NICU nurse that were present at his birth, and one OB that wasn’t present, but who had consulted with the delivering doctor. The delivering doctor told her that based on what they saw inside me, they don’t even know how I got pregnant in the first place. My fallopian tubes are adhered to the back of my uterus and so is part of my bowel. Also, I have more fibroids – and bigger – than they knew of. Rawley was kind of twisted and smooshed around them, and they had to surgically cut a jagged vertical line around them to get him out. The NICU nurse said the time that elapsed between administering me the spinal and Rawley being handed over to the NICU team was the shortest she’s ever seen. They moved fast – thank God! It clearly made a difference. Rawley was extremely critical at delivery; his Apgar score was one at birth, and he had to be resuscitated. At five minutes, his Apgar was four, and at ten minutes, it was seven.
Rawley’s First Month
Respiratory distress is typical in premature babies; their brains are too immature to manage cardiac and respiratory function. They literally forget to breathe and have frequent apnea episodes combined with big drops in their heart rate. When the heart rate dips below 100 beats per minute, it’s known as a Brady/cardia episode. Those are common among preemies, but are supposed to stop around 34 weeks gestational age.
Rawley is no exception. Lungs should go down to the 12th rib; his go to the 8th, as a result of the lack of fluid in utero. Lungs can continue expanding up until the 8th year of life, so while Rawley may not be the next Lance Armstrong, he may not experience any severe respiratory challenges over the long-term, either, if all goes well.
After birth, he was placed on a machine called an oscillator, which kept his lungs continually expanded at just the right pressure and size. He was later moved to a ventilator, on which he could initiate his own breaths. He was eventually moved to a nasal cannula (nose tube with oxygen) and remains on that today. All of the devices they’ve used on Rawley are an attempt to keep his blood oxygen saturation between 85-95% since his brain doesn’t do that very well on its own, yet. If the amount of oxygen is too high, it can damage his eyes. If it’s too low for too long, it can damage his brain. Without assistance, Rawley has frequent “desaturations,” when his blood oxygen level drops below 85% (as low as in the 30s and 40s at his worst), and sometimes, it goes above 95%. He also struggles to breathe at a normal rate; lately his respirations have been too fast. They should be below 60/minute but have been averaging above 90-120/minute. It’s hard to suck and swallow food when you are breathing that fast, so the doctors are a little concerned about his respiratory rate. By 34 weeks, Rawley’s brain should be developed enough to start regulating oxygen levels and breathing without help.
On June 13th, Rawley received a blood transfusion to help increase the number of red blood cells in his body. Red blood cells carry oxygen around the body, so when they are too low, everything else is impacted. The heart speeds up, digestion slows, breathing gets faster, and blood oxygen goes down. As a preemie, Rawley’s RBC count was naturally low to begin with and then further depleted due to the frequent blood draws characteristic of NICU care. Transfusions in preemies are common, but still scary for parents! That was a hard day for me and Nathan.
Preemie veins are super tiny, as you can imagine. At first the NICU team drew blood and gave Rawley drugs and nutrition through an IV line in his umbilical cord. Then, when his cord dried up, they placed a PICC line in his arm, which is a tiny IV line the size of a thread that ran through his arm right into his heart. Once he stabilized, the PICC line was removed, and now he gets stuck in his heel when he needs blood drawn. For his transfusion, a NeoFlight (neonatal helicopter paramedic) ran the IV line in his foot, after two nurses failed to get one in his arm.
Since birth, Rawley has had a feeding tube going down his throat to his stomach, through which he gets caffeine, vitamins, and breast milk mixed with a supplemental powder to add calories. He is fully digesting his feeds every 3 hours, and has only mild reflux (which is common). He is a good pooper. 🙂 At about 34 weeks, preemies start to develop the ability to manage the suck/swallow/breathe combo, so at that point, we will start introducing a bottle, then breast-feeding, while making sure he continues to breathe well during feedings and gain weight. In the meantime, I am pumping breast milk around the clock, both at home and at the hospital when there. I leave small amounts at the hospital and store the rest in a freezer at home. I’ll enjoy having a big relief supply…someday!!
Preemies have really raw nerve endings and handling them too much at first upsets them. Once able to be held, it must be skin-on-skin because that is the only way they stay warm enough to maintain their body temperature. The first time I held Rawley, he was 11 days old. The wait seemed interminable, but we had to wait until he was no longer intubated and could tolerate being touched. Holding him that day was one of the best moments of my life, and now we enjoy doing so every day.
Overall, the doctors say Rawley is doing extremely well given the odds that were stacked against him as a pPROM baby. His brain ultrasounds show normal division and development; his retinas show no signs of damage; his heart echocardiograms show normal activity. (At birth, one of his valves wasn’t closed, which sometimes requires medicine or surgery, but it closed on its own! Yay. He has one other small valve opening but it isn’t dangerous.) We’ve experienced so many miracles!
If you are the praying kind, you can pray for Rawley in these areas. If not, send him your love and light and healing vibes. Pray that:
- his lungs expand.
- his brain, eye, and heart scans continue to show normal development.
- he continues to gain an appropriate amount of weight. He is about 4 lbs at writing! A whole pound more than his birth weight. He was gaining a little too fast recently due to fluid retention, and he had to start taking some diuretic meds.
- by 34 weeks (June 28), his blood oxygen saturations are normal so he can be weaned off of the nasal cannula.
- he will be able to master the suck/swallow/breathe combo starting about 34 weeks.
- he is off oxygen by 36 weeks (July 12). If not, he may have to go home on oxygen, and will have chronic lung disease, which means he’ll be more prone to infection and hospitalizations when he gets sick as a baby and toddler.
People frequently ask us when Rawley will come home. We really don’t know yet, but the doctors say it will most likely be between 37-40 weeks gestational age. In other words, around his original due date, which was August 9, 2012. He can’t leave the hospital until he can 1) maintain his body temperature in room air, 2) eat on his own via nipple, either bottle or breast (or both), and still gain weight, and 3) stop desaturating and having Brady/cardia spells. So we have a long road ahead yet.
We can’t wait to have him home!