Eleanor's Story

Eleanor has had quite the week! She started her steroid regimen on Tuesday to help open her airways, with three days left on antibiotics. The goal was to extubate by Thursday or Friday depending on her reaction to the steroids. She quickly weaned her oxygen assistance (hooray for steroids doing their job!) but continued to have major drops in her heart rate (super common amongst the teeny babies).  Friday morning rolled around. Nurse Kaitlin had said she would call if anything happened overnight that would prevent extubation. Sure enough, on our way up to Akron Friday morning, she called and said Eleanor had needed bagged (she dropped her heart rate so low she wasn’t coming up with the aid of ventilator oxygen and needed a manually pumped bag to do the trick), so she assumed there'd be no extubation. So, Dad dropped Mom off and headed back to Canton. Thirty-ish minutes later, the doctors made their respiratory rounds and decided they were going to extubate anyhow, as it’s...

Eleanor had a wonderful first Valentines. Her Nonna and Grandma bought her some adorable outfits and new books! Auntie Pam also bought her a cute book and I too brought her new books. Everything has been relatively status quo for the little lady. She actually gets skipped in rounds and saved for last since she’s so boring these days (this is a good thing as the sick babies take precedence). She has been doing well with the antibiotics and has had no positive blood cultures as of 2/7. She will have her last dose on the 21st and after they will begin a round of steroids to help open her airways (keep them from swelling) in anticipation of extubating her ET tube (the tube down her throat that helps her breath) and switching her to the elephant mask (very much not an actual term but the doctors appreciated me calling it that). She did receive a new ET tube on the 15th because she outgrew the previous size and had a very large leak. Doctors wanted to push this off until she was f...

On Saturday, doctors continued to treat the infection from Thursday and determined that the bacteria serratia was present. This is a bacteria that lives in tubes and damp places, i.e. PICC lines, breathing tubes, etc. Doctors explained that it's a bacteria our grown bodies wouldn't even notice, but since she's so small and her immune system so underdeveloped, it hits her hard. Her blood gases were actually great during her infection, so it's likely she didn't even know she had it. They also did a spinal tap to rule out her having meningitis, in addition to the serratia. The liquid that was removed was clear, generally a good sign, but results won't be complete for two days. So far the spinal tap cultures haven't turned up anything. If she doesn't have meningitis, she can have fewer days of antibiotics, which means less of a likelihood that the antibiotics will kill all her good bacteria. The infection cultures taken on Thursday were negative (other t...

It was a rough morning for Eleanor and Kim. Eleanor's lungs are having some issues, and so doctors this morning took some cultures, a blood sample, and inserted a catheter to collect a urine sample. Doctors are thinking it's a lung infection, which would be the best case scenario, but again, they won't know for a bit. Kim said she was a hot mess and almost passed out at one point, but Nonna told me over the phone that she did a good job of knowing when to step away and sit down. It will be about 48 hours before any results can be interpreted and they can rule some things out and figure out what's going on. Eleanor, I'm told, did better all afternoon, but her oxygen help was still higher. Her stitches were removed in her right side. They are proactively treating her in case it's an infection with antibiotics and she has an IV in her head (this is the easiest and best veins to hit, as gruesome as it is to picture). If it's not an infection, they will...

Eleanor had an eventful day to say the least. When Mommy got to the NICU, nurse Kathy gave her the game plan for the day and shared that they intended on taking Eleanor's ventilator tube out and replacing it with a nose mask, which would require her to do more work. Mom was nervous, but listens to the doctors. So, at 11:45, the respiratory team came in to remove her tube and place the mask (which is a whole head contraption that made Eleanor resemble an elephant lady). Eleanor absolutely hated the entire ordeal. Her heart rate was awful, she was taking an enormous number of breaths, and Mom was borderline having a heart attack.  She was left on the elephant tube for about 10 minutes before they had to re-intubate. Another heart attack for mommy (who was also starving and had low blood sugar and was turning pale, according to Nonna). They gave Eleanor morphine to ease her annoyance and got the fresh new tube back in just fine. Eleanor’s stats came back up and she was quite ...

Today was a great day to be an Eleanor! Mom got to hold her and love on her for TWO hours today and it was a very emotional experience, and Dad got lots of hands on time today. Eleanor is looking and doing so good, as evidenced by the amount of space in her room...there are fewer machines! She is currently on a setting on her breathing tube that lets her control the pressure on her lungs. She now dictates how much help she gets with breathing, and her lungs will continue to soften the more she progresses. Baby's food has been upped, and we're hoping she poops sometime this evening (her tummy is soft still, so who knows). I noted that she has no umbilical lines now (hasn't for a couple days, I believe), and Kim started explaining the different colors of the tubes she's left with...she's got an orange and a green, and I already forget the difference between them and what they do, so I'll try to be more detailed about that in the future. It's hard to keep...