Eleanor's Story

Today's post is a twofer. Yesterday started out well enough. Mom and Dad got a bit of hands-on time with Eleanor with her lid off. Things stayed mostly good until about 3pm. El's blood pressure was low yesterday. She was at 25, but because of her hypertension, she should have been in at least the 40-50 range (normal for babies is 25-30). A surgeon was called in to remove the chest tubes in her right side and replace them with a larger tube, usually used on bigger kids. The tubes that were already placed in her right side were not sucking the air out of the right lung as they should have been. Because of the procedure and the low blood pressure, she was given steroids to help her out, and subsequently her blood sugar went back up. Between yesterday and today, she's had just a spot of insulin to get her blood glucose level back down, and it is already down from this morning. She'll have another BGT (blood glucose test) at about 9pm tonight just to ensure that nu

*exhales* What a day. Eleanor had a very eventful morning and has gone through quite a lot today. In her PICC line procedure, doctors couldn't place the line initially and had to use ultrasound to ensure good placement on the second attempt. Her line is placed up through her right leg. She has orders for physical therapy and occupational therapy tomorrow for assessment. The PICC line would normally have gone in her arm, but they were unable to stretch her arm as much as was required. A chest x-ray showed good placement on the PICC line. She was able to have her left chest tube out today, meaning the left lung is functioning well on its own. She still has an umbilical line and was undergoing a blood transfusion due to low hemoglobin levels (this is pretty normal). Of course, she still also has the breathing tube. After her busy morning, nurses were increasing her oxygen because she is, understandably, too tired to be doing everything on her own at this point. Nitric was up to

A Sunday update on our little lady, via texts from Kim: Doctors are taking Eleanor off her insulin to see how she does. As of around 5pm, her sugar was at 173. She was also able to have an arterial line removed from her belly, and doctors may insert a PICC line tomorrow in order to remove the other line from her belly button. A PICC line - or percutaneously inserted central catheter - is an IV line that travels through the arm and up through the chest, and is less likely to get infected. In addition, nurses removed one of her machines (?!). Upon further questioning, Kim said that she forgets what it's called (understandable), but that it takes her blood, runs diagnostics, and then puts it back in. So, yay for the bambino no longer having to share her blood with a machine! Asked for a quote, Eleanor responded that the machine did not "spark joy," so out it goes (jokes). They're also taking her nitric back down to 5 and seeing how she tolerates that. Last evenin

I am happy to report on another good day for Eleanor! She passed her second night in a row with no phone calls home. She was very active today, and we saw her move around a lot (hence the title of this post...El doesn't quite have a tuchus, but she's getting there). She is quite the spunky baby, with strong opinions on what she likes and does not like. Kim was recounting to me that the doctors knew this right away in her first couple of days when she did NOT tolerate oscillation (a go-to for preterm babies to help level out their oxygen -- it simulates them being in the womb and they're generally very receptive to it). Today saw an additional decrease in nitric levels, down from 10 yesterday to 5, and baby is off dopamine completely. Her nurses gave her medicine in response to her fidgetiness (that's a word now) to ensure she is comfortable, while keeping an eye her heart rate to ensure she doesn't get too stressed, with the option to give morphine if necessary.

Suffice it to say that today (Friday) was a very good day, and not just because the sun was shining in Akron, Ohio. Though Eleanor is luxuriating at 98 degrees and 70 percent humidity on a regular basis, the rest of us will take what we can get. Kim and Alex were able to return home together Thursday evening, and Kim got to take a shower at home and sleep in her own bed for the first time in weeks. Mom and Dad received NO calls from the hospital in the middle of the night, meaning that Eleanor had a good night, too. Because she did not soil her diaper yesterday evening, she was catheterized in the morning. As it turned out, she indeed had a full bladder, but just didn't want to go, apparently, the silly girl. This morning, the nurses placed a blanket beside Eleanor that Kim had carried on her, so that baby can sense her mother's presence. She also had her eye mask removed following yesterday's bilirubin treatment, and her grandparents we were able to meet her for the

Hi friends and family of Kim, Alex, and baby Eleanor Sutara, After talking with Kim and Alex, it seemed easiest to send updates to everyone through a blog post. We are grateful and appreciative of everyone's concern, support, and well wishes as Eleanor begins her long journey in Akron Children's. Eleanor is a PPROM baby, meaning that Kim experienced a preterm premature rupture of the membranes (PPROM), showing little to no amniotic fluid in utero, and was subsequently hospitalized long-term for monitoring at 24 weeks following a large bleeding episode, with the hopes that the baby would be able to hang in to 34 weeks. I will let Kim elaborate if she wants on the pre-birth details, but for now I'm just slapping some hard and fast details together from what I can immediately recall. Heart monitoring of the baby beginning on Saturday, 19 January revealed some variability, and Kim was taken to the labor and delivery ward as a precaution. By Tuesday morning, Kim's doct