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 #1 https://www.caringbridge.org/visit/babynova
NOVA'S CHRONICLE week #2 (Feb 7, 2021 - Feb xx, 2021)
Feb 7 highlight of the day... a slight "gag reflex" was detected from Nova today !
Big day on tap for tomorrow:
Feb 8 highlighted by MRI and echo. Nova continues good progress.
☑️MRI - Monday 2/8
☑️Heart monitor (echo) - Monday 2/8
🔲Upper GI - Tuesday 2/9
🔲Duodenal Atresia surgery - Wednesday 2/10
🔲EEG - Thursday 2/11
Per pics in ' Baby Nova 1' gallery, Nova wrapped up and ready for MRI. She did well, as infants can often be a challenge, but she was not. Results of the MRI will be reviewed in conjunction with EEG (to be taken Wednesday or Thursday) after EEG.
Feb 9 highlighted by removal of nasal breathing device, and Nova is breathing all on her own now! (see pics in 'Baby Nova 1" gallery)
Nova also had Upper GI which went well, and she continues to be a trooper and show good progress.
☑️Heart monitor (echo)
🔲EEG - Wednesday 2/10 at around 8 am EST
🔲Duodenal Atresia surgery - Wednesday 2/10 at around 12:30 pm EST
All good with Upper GI and Atresia surgery now scheduled for tomorrow afternoon.
Feb 10 highlighted thus far by completion of EEG this morning and successful Duodenal Atresia surgery this afternoon.
☑️Heart monitor (echo)
☑️Duodenal Atresia surgery
☑️Appendectomy (took out appendix since they were already in the area)
MESSAGE FROM MAJA AND CHARLIE
Nova’s surgery to repair her duodenal atresia is complete and was successful! We are very relieved little Nova can have a break from all her invasive procedures and get some well deserved rest.
Thank you everyone for all the support and prayers we’ve received. It’s been uplifting to see all the outreach and care you all have shown for Nova. It has given us strength to get through a very stressful ten days.
Nova’s health has stabilized from where it was one week ago. She will likely require a few more weeks of recovery before she is discharged from the NICU.
We are now awaiting test results from her EEG and MRI to see the level of brain injuries she suffered from the delivery trauma.
Thank you again for everyone’s continued support and prayers. It feels like Nova has an army marching behind her. We appreciate all the healthcare recommendations provided to us. It is so important we get her the best care possible and thank you all for helping in this quest.
We will continue to keep you all posted as more develops.
Many thanks to everyone & sending our love,
Maja & Charlie
Heard from Maja and Charlie just before bath time for Nova.
Will be great to get a bath to get all the "stickies" off from EEG yesterday.
Also another "add on" from Duodenal Atresia surgery yesterday, per Charlie, Nova also had her appendix removed, "saves Maja and me a future visit to the ER 😅"... figured they would take the appendix out as well since they were right there.
All reports continue to be directionally positive!
Highlight of the day - "Getting to snuggle with Mom" (see pics in Nova 1 gallery).
Breathing apparatus also removed !
Another directionally positive day for baby Nova as she continues to recover and heal from her multiple procedures/surgeries from earlier in the week. She certainly is enjoying and comforted by being snuggled and love on by mom and dad and NICU nurses vs being poked on and prodded and being cut on by the surgeons (see pics in Nova 1 gallery)
Per text received from Charlie, Maja and he met yesterday with Neurologist Dr Bultemeyer - who has reviewed Nova’s EEG & MRI. She said considering what happened, she feels Nova is at an increased risk of having cerebral palsy or other development delays and that we would benefit from being in a larger city with access to more specialists. On the bright side, she was encouraged by the results, saying the results of the EEG and MRI were “better than expected”. Overall, she said it is too early to determine anything at this point, saying a baby’s brain is like plastic and it is quite remarkable how the brain can heal from an injury early in life. She said the most important developmental care Nova will receive is at home from her parents.
In other news, Nova received plenty of snuggles. Nova’s bottle of draining stomach bile spilled all over Charlie during a snuggle session. Maja commented, “We were expecting to deal with poop, pee and vomit...but stomach acid?!?”
Nova completed her first feeding through her "G-tube" (Gastrostomy Tube).
More of a "gag reflex" was displayed by Nova today than anytime previous (critical to Nova's future feeding capabilities)... for now it is the G-Tube.
In regard to Duodenal Atresia surgery, everything with the surgery looks like it has being going according to plan.
Progress continued yesterday on baby Nova's road to recovery.
Nova had several therapy sessions including one with a physical therapist and her first with a speech therapist. Mom and dad also reported back that they could tell that Nova very much enjoyed her first G-Tube feeding and could tell that she was "very satisfied" to have food in her stomach!
Yesterday we dealt with the weather and considerable snowfall in Fort Wayne, IN (6-8 inches) as Maja and Charlie began to implement shifts for Nova's care. Effectively 7 am to 11 pm cover, with several hours of overlap in the afternoon.
Highlights over past few days:
- Started feeding - initially good response -Upped feeding from 5ml to 10 - spit up ensued
- Worried about spit ups with weak gag reflex
- Temporarily stopped feeds & back on nasal cannula (not ventilator) - aided oxygen
- Spit ups less after stopping feeding
- Target to resume feeding through G-tube this weekend
- First skin to skin with Mommy - Nova likes it !!!
Nova turned 3 weeks old yesterday! Maja's initial due date was actually just 3 days ago (2/18/21). Maja and Charlie went to day/night shifts several days ago (around 9 to 9 with some overlap).
Nova was extending her legs on her own and keeping them there voluntarily (see gallery picture)
Arms also seem a bit more relaxed than before. Therapy definitely helping.
Resumed G-Tube feeding and the first feed was great. The 2nd one was good, some hiccups and gargle noises. But on the 3rd Nova spit up immediately
She coughed and cleared her throat on her own. Nurse Jesellyn commented she was pleasantly surprised she was sucking the spit and clearing on her own.
So negative updates on the gastro side, but showing some neuro improvements!
Nova seems like she’s trying to stool, but just constipated. Can’t get it out.
Understand it as a catch 22. They feel like Nova needs to start pooping to get system up and running, but with no food, gonna be no poop.
Also good news - 6pm diaper was brownish liquid - so looks like she’s getting close.