Saturday was Eleanor’s shower. Family and friends gathered and we had a wonderful time and were blessed with such amazing, generous gifts. We are so thankful for all of the love for our little lady.
When we got to the hospital afterward, Eleanor’s favorite nurse Megan had decorated her room and outfitted Eleanor in a pretty pink tutu ensemble for the occasion. Such an all around blessed day. Eleanor, however, was a cranky little thing and was not having it. She didn’t even calm down fully when Mom and Dad held her.
Sunday was a little of the same. Something wasn’t quite right about Eleanor, but we all thought it was normal baby stuff (HA! "normal"!). She did have a few more heart rate dips, but the doctors determined she had just outgrown her dose of caffeine (provided to her to help her tiny brain remember to breathe) and needed more. The nurses even changed her linens to a coffee pattern for the occasion. She still had continued drops after her increased dosage, but they thought it would just take time to kick in.
Which brings us to Monday.
Mom called the nurse when she got up, as she does every morning. As far as she was informed, everything was status quo with a nice weight gain, just a few heart drops, and all of the same oxygen settings as Eleanor had been at the previous few days. This, however, was severely inaccurate information.
Around 9am, Eleanor’s primary care nurse Megan (super familiar with the feisty lady, thank goodness for her) called Mom to inform her that Eleanor had been at significantly increased oxygen overnight (53% from her usual 24-30%) and was struggling to wean back down at that moment. She was also pulling very, very hard with her breathing and continually dropped her heart rate. They had taken a blood gas and were awaiting the results.
Mom was upset by the news but was hopeful it was just a little phase. A little while later, Megan called again to inform Mom that Eleanor had a heavy level of CO2 in her blood (signifying that Eleanor was struggling even more so than she let on in terms of oxygenating) and that the doctors had increased her pressure settings and backup settings to hopefully give her the boost she needed.
Fast forward about 30 mins, Dr. Leonardi gave mom a ring (you know when the big shots are calling you, something is amiss) and caught her up on Eleanor’s struggle. She also mentioned they heaved up her backup settings even more in hopes that would help Eleanor breathe, but also prepared Mom for the worst, that Eleanor would need intubated and placed back on the ventilator if this didn’t help.
So, fast forward through lots of tears and worry and a long drive from work to the hospital and a stint in the quiet room, and we have a new little tube in our throat which is a giant step in the wrong direction. Eleanor, however, much appreciated the tube and started to breathe easier (the ventilator is breathing for her, though she does have the ability to breathe over it) and kept her heart rate up. She also had to endure her eye exam after all of this, so thankfully the care team was proactive in intubating the poor girl.
They repeated her blood gas at 5pm and her CO2 had settled down to a normal level, proving the tube was highly necessary and there was nothing else suspected to be the cause of her struggles.
Mom and Megan got Eleanor all dressed up cute and ready to sleep the rest of the day, and this morning the nurse said she had a great night and was even at room air for a long while.
Today was another big day for the little peanut. Dr. Leonardi wanted a heart echo to make sure the tough time breathing didn’t have any negative effects on her teeny heart. She assured Mom during rounds that it was just to make sure and that there was nothing suspected to be wrong. Mom held Eleanor’s head and legs the whole time and assured her it was okay, and Eleanor tolerated the whole thing like a champ. When Mom and Dad left for the day, the results were not yet available.
Eleanor is enjoying her new vent and it is helping her tremendously, but being on the vent for prolonged periods of time has negative effects on her tiny infant body, so we hope this is a quick ride with the tube.
We appreciate all of the love and support for our family as we continue our long NICU journey.
When we got to the hospital afterward, Eleanor’s favorite nurse Megan had decorated her room and outfitted Eleanor in a pretty pink tutu ensemble for the occasion. Such an all around blessed day. Eleanor, however, was a cranky little thing and was not having it. She didn’t even calm down fully when Mom and Dad held her.
Sunday was a little of the same. Something wasn’t quite right about Eleanor, but we all thought it was normal baby stuff (HA! "normal"!). She did have a few more heart rate dips, but the doctors determined she had just outgrown her dose of caffeine (provided to her to help her tiny brain remember to breathe) and needed more. The nurses even changed her linens to a coffee pattern for the occasion. She still had continued drops after her increased dosage, but they thought it would just take time to kick in.
Which brings us to Monday.
Mom called the nurse when she got up, as she does every morning. As far as she was informed, everything was status quo with a nice weight gain, just a few heart drops, and all of the same oxygen settings as Eleanor had been at the previous few days. This, however, was severely inaccurate information.
Around 9am, Eleanor’s primary care nurse Megan (super familiar with the feisty lady, thank goodness for her) called Mom to inform her that Eleanor had been at significantly increased oxygen overnight (53% from her usual 24-30%) and was struggling to wean back down at that moment. She was also pulling very, very hard with her breathing and continually dropped her heart rate. They had taken a blood gas and were awaiting the results.
Mom was upset by the news but was hopeful it was just a little phase. A little while later, Megan called again to inform Mom that Eleanor had a heavy level of CO2 in her blood (signifying that Eleanor was struggling even more so than she let on in terms of oxygenating) and that the doctors had increased her pressure settings and backup settings to hopefully give her the boost she needed.
Fast forward about 30 mins, Dr. Leonardi gave mom a ring (you know when the big shots are calling you, something is amiss) and caught her up on Eleanor’s struggle. She also mentioned they heaved up her backup settings even more in hopes that would help Eleanor breathe, but also prepared Mom for the worst, that Eleanor would need intubated and placed back on the ventilator if this didn’t help.
So, fast forward through lots of tears and worry and a long drive from work to the hospital and a stint in the quiet room, and we have a new little tube in our throat which is a giant step in the wrong direction. Eleanor, however, much appreciated the tube and started to breathe easier (the ventilator is breathing for her, though she does have the ability to breathe over it) and kept her heart rate up. She also had to endure her eye exam after all of this, so thankfully the care team was proactive in intubating the poor girl.
They repeated her blood gas at 5pm and her CO2 had settled down to a normal level, proving the tube was highly necessary and there was nothing else suspected to be the cause of her struggles.
Mom and Megan got Eleanor all dressed up cute and ready to sleep the rest of the day, and this morning the nurse said she had a great night and was even at room air for a long while.
Today was another big day for the little peanut. Dr. Leonardi wanted a heart echo to make sure the tough time breathing didn’t have any negative effects on her teeny heart. She assured Mom during rounds that it was just to make sure and that there was nothing suspected to be wrong. Mom held Eleanor’s head and legs the whole time and assured her it was okay, and Eleanor tolerated the whole thing like a champ. When Mom and Dad left for the day, the results were not yet available.
Eleanor is enjoying her new vent and it is helping her tremendously, but being on the vent for prolonged periods of time has negative effects on her tiny infant body, so we hope this is a quick ride with the tube.
We appreciate all of the love and support for our family as we continue our long NICU journey.
Come on little Elle keep fighting. The family can't wait to meet you. Just keep swimming baby girl. Mom,Dad,Gramp,Gram,Auntie be strong fam. Prayers for Strength and healing ❤❤❤
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