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Jan 9, 2018 Latest post:
Feb 2, 2018
Savannah has arrived and we are so thrilled and in love! Her journey has been a bit bumpier than any of us could have imagined.
At four hours of life, she developed respiratory distress and was swiftly taken to the NICU (neonatal intensive care unit) at Walter Reed National Military Medical Center, where she was born. She spent several hours on CPAP and then was transitioned to high-flow oxygen, which she required for several days. She was treated with antibiotics until a pneumonia could be ruled out and started on IV fluids with glucose since she could not feed. When the amount and pressure of her oxygen was turned down enough, she had a feeding tube in her nose and mouth since she was not able to breast feed right away. She was eventually weaned off of oxygen and gradually transitioned to bottle feeding, and was able to begin breastfeeding shortly before her discharge on day of life 7. Ultimately her diagnosis at that time was not well understood—just transient respiratory distress. She was jaundiced and had a tiny heart murmur (both can be expected in a newborn), but otherwise had a clean bill of health. The thought was perhaps she had a surfactant deficiency—which is a known complication of having gestational diabetes requiring insulin.
Once discharged, we had several follow-up pediatrics clinic visits over the next few days. The first was to monitor her jaundice and ensure she didn’t require treatment. A day or maybe two (who can keep track with a newborn?!?) after we were home from the hospital we got a phone call around 9:00 PM from a pediatric endocrinology fellow from Walter Reed. My heart dropped immediately... why in the world would a stranger be calling so late? He quickly and confidently introduced himself and told us Savannah had an abnormal state newborn screen. Her thyroid levels were dangerously low and she would need to be seen at the hospital first thing in the morning to confirm her blood work and start treatment.
The next morning and afternoon, Congenital Hypothyroidism (CH) was confirmed. She subsequently became quite popular at Walter Reed as her case was quite severe with her thyroid function studies being so profoundly abnormal... with a TSH of >1000 (greater than 4 is abnormal). Most of her (now expanding) care team had never seen numbers that high. Fortunatley, treatment for CH is relatively simple—daily medication for life. It’s adjusting the dose as these kids grow and change so quickly that’s a bit tricky. She was started on levothyroxine (Synthroid) that day. The hiccup with treating CH is that the medication only comes in tablet form—no liquid available as a children’s or infant’s formulation. So each day we have to crush the tablet and finger feed it to our newborn, trying to get every lit bit of powder in her drooly, not yet coordinated mouth. It is definitely a two-parent job! The CH diagnosis also explains her prolonged jaundice, respiratory trouble at birth, and some physical exam findings: she has a larger than normal soft spot (fontanelle) in front and back and she is always sticking her tongue out because it’s a bit large (she’ll grow into it!).
This brings us to her most recent stepping stone. At 19 days old, she started to get a bit of a running nose and even a little cough. She had been back and forth to the clinic every few days since her initial hospital discharge because of the jaundice and CH, so we weren’t that surprised that our newborn may have caught a cold. We already had an appointment for a thyroid ultrasound scheduled for that day, so we thought it best to see the pediatrician about this little sniffle, too.
By the time Savannah was being seen by the pediatrician that afternoon, she was having a harder time breathing and her coughing was much worse. After a couple of x-rays and a nose swab, the pediatrician thought it best to admit her overnight for observation— “just in case.” We are forever thankful for that decision.
At her arrival to the pediatrics ward, Savannah needed supplemental oxygen. Less than an hour later, an emergency was called out over the hospital intercom that Savannah needed immediate help. The resuscitation team was by her bedside within moments and it wasn’t long before they ran with her to the Pediatric Intensive Care Unit (PICU). We watched from the doorway for over an hour, while nurses, doctors and corpsman started IVs, drew labs, and restored her breathing with a Bi-Pap device. Her ‘cold’ was confirmed as RSV at that point and we were told how bad RSV was hitting kids this season in particular and to prepare that she was still early in the course and that it would likely get worse before it got better. We had no idea how bad it could actually get at that point.
She was able to breath with the help of the bi-pap and frequent suctioning for the next 2-ish days. She began to have more difficulty and her labs (blood gases) were starting to show signs that she was getting tired of working so hard to breath. The decision was made at that point to sedate and intubate her, and to breath for her, to give her tiny body a chance to heal. That day, she got even sicker, requiring antibiotics for fever and pressors (medications to raise her blood pressure). She had arterial and central femoral lines placed to better monitor her vital signs and give her rapid medications as she needed it. She was transitioned from tube feeds to IV nutrition at this point (TPN). She was very fragile in that every time she was touched, moved, or startled, her oxygen saturation would quickly decrease to very low levels requiring her care team to manually ventilate her with an Ambu bag until she recovered, often also requiring additional sedatives (Versed and Fentanyl) and paralytics (Vecueonum). The severity of these ‘episodes’ was not consistent with a baby having RSV alone, and the doctors thought that maybe a heart problem was making her recovering more complicated—after all, she did have that tiny murmur.
The pediatric cardiologist was called in from home and he performed an echocardiogram at her bedside—not an easy task give the number of machines surrounding her. He identified a patent foramen ovale (PFO), small hole between the atria of her heart, where blood was going the wrong direction, likely contributing to her episodes. There was also evidence that the pressures in the blood vessels in her lungs was elevated (pulmonary hypertension). She was started on Inhaled Nitric Oxide through her ventilator during this time as a treatment for her low oxygen and possible pulmonary hypertension. The iNO helps bind oxygen to red blood cells. It’s not a benign treatment—as they can’t just start and stop it, it has to be weaned slowly. That night, she remained very sick and fragile. Her care team consulted other specialists at Children’s National and Hopkins, about a possible transfer to higher level of care, but these folks confirmed that she was getting what she needed and they wouldn’t do anything differently for her. This was hospial day five, maybe—New Years. They also thought that she may be too fragile to transfer anyways, since moving her in her own bed caused her oxygen numbers to plummet requiring brisk resuscitation.
Savannah remained intubated and on the nitric oxide and antibiotics for the next couple of days. She began to show improvement, no longer requiring the pressors and requiring less pressure and oxygen from the ventilator. She was even restarted on tube feeds of expressed breast milk. She was able to be moved and touched and even soothed by our voices. We were excited about her recovery.
Then, on Hospital day 10, she became sick again quite quickly (aka acutely decompensated). Over a few hours she required more and more oxygen and her ‘episodes’ returned. Her blood gases became very abnormal despite the efforts of her care team. Her endotrachwal tube was replaced, she was given lasix to help clear edema from her lungs, and many ventilator changes were made. The Walter Reed Neonatologists were consulted and met with her pediatric intensivists, to discuss the next steps. They recommended transfer to Children’s National where she could get the highest level of care. In fact, the transfer team was already en route. It was just minutes before the helicopter landed and the Team from Children’s was at her bedside.