This post covers January 29-February 6, 2021 — Eloise’s first week of life. This first section we posted this originally on February 3 2021 on Eloise’s facebook group to update all of our family and friends.
Eloise (Healthy/Fighter) Celes (Heavenly)
Eloise was a name we chose while we were pregnant. It can mean either healthy or fighter/warrior. Since we’ve had so many scares, it seemed a fitting name — a declaration that she would be healthy, and that whatever trials came her way, she’d fight her way out of them.
We had no idea how much we’d need that name.
It’s become a little overwhelming at the moment to try to respond to the incredibly kind and supportive messages that come our way. So we put together this facebook page to keep our friends, family, and those in their circles updated. Feel free to share this page and tell Eloise’s story.
GOAL 1: GET PREGNANT AND STAY PREGNANT
SHORT STORY:
It took us 13 years.
LONG STORY:
It took us 13+ years, 1 surgery, 3 Clomid trials, 8 IVF treatments, and 2 babies lost (first IVF treatment we lost Ava at 13 weeks, the 8th IVF treatment we lost Eloise’s twin brother, Leonid, at 17 weeks) to get here.
GOAL 2: BIRTH A LIVE BABY
SHORT STORY:
Eloise was minutes away from dying when she was born via emergency c-section on Friday, January 29. She was born at 38+3 weeks at 41 cm and 2253 g. 97% of babies her age were born larger.
LONG STORY:
The doctors gave Eloise a 50/50 chance of survival at our 6 week ultrasound where her twin was measuring ahead and she was measuring behind. At 13 weeks the doctor thought Eloise might have Down Syndrome and offered us a “reduction in the pregnancy” if the test results came back showing she had a chromosomal disorder. The NIPTify test we took in Estonia cleared her for the most common chromosome disorders. But at 20 weeks we discovered, with a lot of surprise, that Leonid didn’t make it, but Eloise was growing. But at a place where 97% of other babies her age were larger. Fast forward to my third trimester and I was getting scans every week as well as non-stress tests. The doctors thought they would need to deliver her via c-section at 34 weeks, but decided she might be okay and so they let us decide if we wanted to induce early (sometime between 37 weeks and her due date) or wait for natural birth. We opted to induce at 38 weeks. From there, through a series of events that would bore you to read through, it took 5 days to get the point where I was in labor with Eloise. And, if at any point things had gone to normal plan, we likely would have lost her. When my contractions began on Friday after the doctors broke my water, it just so happened I was still hooked up to a CTG monitor (non-stress test). I wasn’t supposed to be on the monitor still, but our midwife was fiddling with oxytocin (pitocin) and hadn’t taken them off yet. As she was struggling to get the oxytocin ready, Brian watched my contractions start suddenly, and, at the same time, saw Eloise’s heartrate go from her normal 150ish to nosedive completely off the screen. If my contractions had begun any earlier during the week when I wasn’t being monitored (95% of the time I wasn’t!) then we would have lost her.
Brian waited for 20 long minutes in the corridor, having no idea if either of us made it. He then got “the best 45 seconds” of his life when our midwife argued to the NICU staff that Brian deserved to see his baby girl before he got kicked out of the hospital. (Covid sucks.)
I saw her 8 hours later for 2 minutes, unable to touch her with anything but my left hand. But I was just so grateful she was ALIVE that I sobbed (gosh that was not fun on the c-section wound).
GOAL 3: HAVE A HEALTHY BABY
SHORT STORY:
As I write, Eloise is still in the NICU. Besides being super tiny, it turns out she has a bunch of problems we didn’t know about, and possibly even more — maybe very serious — that we have yet to discover. Thursday, February 4th the doctors will begin running chromosomal and DNA tests on her blood. And we will get an MRI to investigate the abnormalities (dark spots) that showed up on her brain ultrasound she got on Tuesday.
LONG STORY:
Eloise was born, surprisingly, with a whole host of problems:
- She’s very very very tiny: 41 cm (16 in) & 2.25 kilos (a little under 5 lbs).
- All 4 of her small toes are fused together on each foot. (As long as all of her bones are intact, and it looks like they are, this should be able to be resolved with surgery.)
- Both of her pointer fingers have something wrong where they act more like thumbs than pointer fingers and aren’t in line with her other 3. (This is also hopefully resolved with surgery)
- She might be missing a rectum muscle (This will need more investigations, but I believe can be resolved with surgery)
- The ultrasound on Tuesday showed there’s some sort of tube or something still open on her abdomen but doctors think that should hopefully close on its own in the next week or so.
- The ultrasound she did on Tuesday showed some dark spots on her brain that aren’t normally there when they scan a newborn’s brain. It could be as harmless as a few cysts or hematomas that might resolve themselves, or it could mean there’s permanent damage to her brain.
The good news is that when I spoke with the geneticist on Wednesday, February 3, and she said she was expecting something very bad when she was told Eloise had all these problems. But she said, instead, she was positively surprised by Eloise. She said the fact that she’s so active and alert and essentially acts like a normal newborn is a really good sign. She said her gut feeling is that any abnormalities probably happened super early in the pregnancy as birth defects rather than genetic problems, but wants to rule out chromosomal/genetic disorders. And wants to run an MRI on Thursday, 4 February to get a clearer picture of the spots on her brain.
GOAL 4: DON’T MESS UP PARENTHOOD
Since we’re still working on goal #3, we haven’t gotten to this one yet. I’d love to say “we’re breastfeeding, we’re tired from being up all night, and we’re working on figuring out how to differentiate her cries” but mostly it’s just “Follow the NICU schedule and spend as much time with her as I can while Brian tries to hold himself together at home, being unable to visit due to COVID.”
HERE’S WHERE YOU COME IN, READERS
SHORT STORY:
Send all your good thoughts, prayers, vibes — whatever you’ve got — to little Eloise as we work on goal #3. And have her home sooner rather than later.
LONG STORY:
Currently, my days are on a 2.5 hour schedule. I spend 1.5 hours in the NICU, feeding and holding Eloise with as many as 6 cords and wires attached to her. Go back to my room to pump, eat, cry, and use the bathroom. Then go back up and do it all over again until the evening when I try to let the night nurses do their thing and I just sleep.
As of Wednesday she’s off her glucose IV feed and they’re just monitoring her blood sugar levels and bilirubin (she is definitely a little yellow at the moment) and only consuming my breastmilk (via cup, bottle, or finger & syringe — basically whatever gets food in her tummy!)
If we’re really really lucky, it looks like Eloise MIGHT be able to come at least join me in my room on Thursday, February 4 if not go home entirely (although we will be back a LOT for outpatient testing and genetics counselling). I’ve been in the hospital since January 25 and although I do deeply appreciate never having to make any food, I’d rather be at home with Brian and Eloise and our kitty cat.
And, if you read it before then, especially that the MRI will show that whatever is on her brain is either harmless or is easily treatable.
Eloise The Tiny Fighter 