The "Nova's Story" page is fluid, and will be continually updated as additional information, photos, requests, etc. as warrant.
We are very thankful for the CaringBridge platform, in that it not only allows us to keep family and friend apprised in an efficient manner real time, but also provides a network for us to; make requests, ask for referrals, solicit experiences, etc. that could be very beneficial to Nova in her journey towards recovery. Current sections below include Nova's Chronicle, Upcoming, Other and Requests.
Link to Baby Nova week #2
NOVA'S CHRONICLE week #1 (Jan 30, 2021 - Feb 6, 2021)
Precious Nova was born to proud parents Maja and Charlie on Saturday evening January 30, 2021 at 9:13pm EST.
It was a traumatic delivery for both mother and child, resulting from the separation of the placenta (happens in about 1 of every 500 births), as the placenta was the source of Nova’s nutrition and oxygen throughout Maja’s pregnancy. The circumstances resulted in an emergency cesarean section having to be performed, and baby Nova was born 13 minutes later. Following 27 minutes of resuscitation efforts, Nova finally breathed her first breathe... a total of 40 minutes from time of placenta abruption.
Following resuscitation, Nova was declared to have suffered Severe HIE (Hypoxic Ischemic Encephalopathy).
First off, we will start by saying that we feel more than blessed that Maja’s physical recovery has been beyond amazing. Maja was up and walking the following morning. Charlie commented that “the nurse had come in to ask if she could assist Maja in getting dressed, and was shocked to see that Maja had already done that herself”. Nurse astounded “it is not normal for you to be able to do so this soon after a C-section”.
In regard to baby Nova, with her life in peril, it was time for her to begin her fight. With the interruption of oxygen to her brain, seizures, a very low heart rate, very low brain activity, etc., she was immediately put on life support.
Within 2 days, Nova was able to breathe above the ventilator, and the breathing tube was replaced with a less invasive nose breathing device for the ventilator.
Additionally, other signs of improvement included: seizures stopping, heart rate stabilizing, pupils dilating (and some opening and closing of eyes), and a slight increase in baseline brain activity. Our precious little angel was fighting for her life, and has seemingly cleared some immediate hurdles.
The next hurdle (and only time will tell regarding potential long term impacts) began shortly after immediate life support initiatives and, congruently with those life support efforts, was implemented to address potential cognitive impairments. Hours after Nova's birth, the "cooling/warming period" began in which her body temperature was intentionally lowered to 91 degrees for a 72-hour period, with the intent and purpose to mitigate/avert brain damage. This “cooling” period ended just after midnight on February 3,
Although there is still a long, long way to go, we received directionally very positive news on Feb 2 that Nova’s brain activity had improved, noting that EEG chart readings that had indicated “Severe abnormality” on Monday, reflected “Moderately abnormal” on Tuesday. Exactly the progress we have been praying for and will continue to pray for.
The next step in Nova’ recover was the "warming period" (50 hour period). The first phase of the warming period was a 14 hour time span spent raising her body temp back to a normal human level (around 98 degrees). The medical team did this by raising the water temperature in the ArcticSun blanket, a water filled, temperature controlled, mat/pad under Nova's body to cool and/or warm the body. The first phase of the warming stage was successfully completed around 2pm on Wednesday Feb 3. The second stage of the warming period was a 36 hour time frame, whereby control of the ideal 98 degree temp was transitioned from the blanket to Nova... Nova now stabilizing her own temperature. Phase 2 of the warming process was completed around 2am on February 5.
February 4 was an amazing day for Nova in her recovery, as EEG reading reflected sustained trace readings of "Normal", improved from "Moderately abnormal" from Feb 2-3, and from "Severely abnormal" as recently as Feb 1. Other directionally favorable developments included significantly more eye movement with eyes opening and closing much more often, and a continuation of Nova tugging on various tubes that are obviously irritating and annoying her (we don't blame you Nova, those tube would annoy all of us as well).
February 5 was a big day for Nova.
- ArcticSun equipment and cooling/warning blanket was removed at 2am
- EEG equipment that has been connected 24/7 was removed
- Nova got to have her first bath !
- Maja was able to hold, snuggle and love on Nova !!!
February 6 was a day of continued improvement in the development of baby Nova. It was now one full week since Nova was born, and Maja and Charlie spent the day with her having opportunities to hold her on occasion and to love on her (see pics in the photo gallery).
With all the good news on developments, there was one piece of information received today that is concerning, and relates to the fact that Nova has yet to present a "gag reflex"... 7 days is the time period for which we would have expected this attribute to present itself in Nova, and it has not. The gag reflex is instrumental in swallowing, and necessary as part of the normal feeding process.
Feb 7 (CONTINUED ON babynova2) as hit 10,000 characters on this page... https://www.caringbridge.org/visit/babynova2
MRI scan tentatively scheduled for Monday Feb 8, 2021 and surgery for Duodenal Atresia looking to be scheduled some time late this week.
FYI, Lisa asked Charlie several days following Nova's birth if he knew her birth weight (as several of you have asked knowing Nova was 3 weeks early) and he said he “was not sure if they weighed her immediately after birth”, but that she was weighed on Jan 30 and was approximately 6 ½ lbs.
Nova's official birth weight of record was 6 lbs. 5 oz.
LEADING up to the birth of Baby Nova - some additional information (per post of February 6, 2020):
During Maja’s ultrasound on December 18, 2020, it was identified that Baby Nova had a “double bubble” (Duodenal Atresia), and Nova was expected to need surgery within 24-48 after birth to rectify the situation.
In short, the condition (incidence of about 1 in every 10,000 births) is a gap/blockage between the bowel and stomach, and the surgery enables the baby to poop. Uploaded in the gallery are 2 pages providing some additional details about Duodenal Atresia. Although the Duodenal Atresia situation has been secondary and is unrelated, it is being introduced to Nova’s Story now as her impending surgery to fix the gap/blockage is looking to be scheduled for sometime later this week.
In the larger picture, would add that Maja’s early delivery did not come as a surprise to us. The “double bubble” can result in an increase in the amniotic fluid around the baby, often resulting in an early delivery. In early/mid January 2021 it was known that Maja’s pregnancy would most likely not go the "full distance" until the Feb 18 due date, and that Nova was likely to be born early… maybe very early. Although those early/mid Jan ultrasounds indicated that Nova was “big and long legged” (already est at 5+ lbs), those last few weeks in Maja’s womb were critical to baby Nova’s additional lung development. Making it past the 36 week mark was critical, and mother and child did it ! Side bar, had mother and child not made it past 36 weeks, the critical cooling/warming blanket process would not have been an option.
THE RESUSCITATION was an amazing story in and of itself (per post of February 6, 2020):
Excerpt from post - 'The 27 minutes was a seemingly very long time period to be resuscitated, and begged the question to Charlie, "what is a normal time period before resuscitation efforts would stop", to which he responded, "normally 10-15 minutes". That answer begged the follow up question to Charlie of "what was different with Nova's situation", to which he replied, "the machine indicated her heart rate was still at 40"...'
Of note, neither Maja nor Charlie were consulted in the decision making process as to "whether or not" to continue/stop resuscitation. Maja was "out" from the anesthesia administered 40 minutes prior (at the start of her C-section), and Charlie was sequestered in a nearby room.
It became evident that the resuscitation was successful to Charlie, while peering through a 1' x 1' window, saw the first of many (15 or more DuPont Hospital team professionals) exit the surgical room with jubilation.
1. Specialized pediatric neurologist referral/recommendations
Post from Feb 3, 2021
Strength in numbers!
If any of you have any comments/connections, please email me at firstname.lastname@example.org
Just received from Charlie:
Can’t talk over the next few hours, but one task I have for parents: If you could help us connect with a specialized pediatric neurosurgeon. There are roughly 900 in the country. Would be beneficial to have one that could review Nova’s records remote and advise on situation. I think our hospital sends info to one in Indy. But would be beneficial to have multiple opinions. Nova starts detailed neurological evaluation tests today.
Thank you all, as multiple feedback was received from you all, and we will be doing much more due diligence in this sector over the next week.