Our NICU Journey
Posted: Fri Feb 03, 2023 5:33 pm
Hello!
I'm Maurie a Cincinnati native who is probably made up of 75% Skyline. I have two children, Caroline (3) and Jackson (2) with my husband, David. Before anyone asks, we are both West Siders, I went to UC and he went to Xavier, the dinner table gets a little awkward around Crosstown Shootout time. Now that you know a little about me, here is my part of our story.
David and I were married in October of 2018, we found out we were pregnant at the end of November 2018, a little sooner than we had planned but we were excited nonetheless! One thing not a lot of people know about us is, that I had a miscarriage right before we got married, so getting pregnant again was scary and not something we were sure we wanted to do right away but things have a funny way of working out. Luckily everything for us was right on track with the pregnancy, we went in for the 20-week ultrasound and it was a girl! We were over the moon, well I was a little sour I lost our bet because I was convinced it was a boy, but that's beside the point, we were excited. When we went in for our 24-week appointment that's when things started to go downhill.
When the doctor came in she went over a few things and asked if I had noticed any swelling, I said yes, but I assumed that was normal. Which it is later on. She was concerned because I had gained a significant amount of weight since my last check so she had me do the 24-hour urine test, get blood drawn, and come back in a week. Well, my anxiety shot through the roof, I went home and googled what it could be and the first thing that came up was Preeclampsia. I didn't have an official diagnosis but I knew something wasn't right. By the way, NEVER google, it sends you down a rabbit hole of despair. We made it a week, the MA takes my blood pressure, and its 160/90, she asks me to lie down and that she will try again in a few minutes but before I could even sit down the doctor comes in and hands us admission papers. She said you need to go straight to Good Sam, the High-Risk team will be waiting for you. You have preeclampsia. Well, those words sucked to hear, at this point, we had no idea how severe it was or what our future looked like. All we knew is we made it to 25 weeks so they would at least try to save her if she came today.
We make it to the hospital and I honestly can't tell you how many people we had in the room with us. The ones I remember the most were the NICU doctors who gave us a very real yet very grim outlook on things. We knew we had to fight if she had any chance of surviving. Sparing some of the more gruesome details, I had severe preeclampsia with HELLP Syndrome. They started me on hypertensive protocol and a 48-hour magnesium drip (it was miserable). Oh by the time we got to the hospital my blood pressure was in the 200s, they had no idea how I was standing. Good news, we got my blood pressure under control and my labs were okay enough to come off the magnesium and see how things went. We were admitted on a Thursday and by Saturday morning things were looking okay, I even thought I would get to go home. HAHA, nope. I was here for the long haul until she decided to come. Saturday and Sunday were fairly good days, I even got moved out of high-risk to a room I would be in until she came.
Sunday afternoon rolls around and things are looking stable, so David goes home for the night because he had been by my side every moment and deserved to sleep in an actual bed. When the doctors come down for the daily ultrasound check, they see she's doing okay, and practicing breathing but her heart rate wasn't great, at this point they want to move me back up to L&D for monitoring to make sure she's okay. What I assumed would be a one-night thing turned into my last night pregnant. Before I was even in a new room, David was back and we made a plan. I would be on continuous monitoring for the night and if things looked better, I'd go back to the AOCU. It was a long night, she wiggled and moved and I started to feel worse, they had to give me multiple rounds of blood pressure meds and then I had a horrible headache come on. My doctor tried Tylenol and said if it doesn't go away in a few hours, we are going to have to take her because your brain is swelling and you could seize. Welp, that sounds like a blast. Unfortunately, the headache never went away and within 30 minutes, Caroline was born at 25 weeks and 4 days. She was 12 inches long and weighed 1 pound 6 ounces. All I remember before I passed out on the table was asking if she was alive, and she was. That's all the mattered. Somewhere in the midst of this, I muttered they pulled a footlong out of me!
She was alive and I was being put back together, while David followed the NICU team to the Unit to save our daughter, and so began our 106-day stay at Good Sam's NICU. Caroline fought like hell and I am happy to say she is a very spicy 3-year-old today! But her battle wasn't easy, she started intubated with an oscillator, which she was on until her lungs were strong enough to move to the Jet Vent (which is what you would think of, when you hear someone is intubated). We weren't able to hold her till she was off the oscillator, she was too fragile and frankly, I was scared of her, of breaking her but when the day came (2-weeks after birth) it was the best day. We could never get her numbers strong enough to extubate her, so we tried the DART protocol, which was a series of steroids that stepped down each day to help the inflammation in her lungs decrease and allow her to breathe more on her own. And it worked! She came off onto a C-PAP machine, we could finally see her face! She looked like a grumpy old man but she was our grumpy old man. Things were progressing well for her, we were fortunate to never deal with infections or NEC, our main focuses were her breathing, growing, eyes, and the PDA in her heart. Luckily her PDA closed, and she continued to improve breathing-wise, she stepped down to the high-flow cannula which was great because we got to hold her more and do more fun things with her! Unfortunately, she did develop ROP and had to have Avastin injections and laser eye surgery after we were released from Good Sam. She slowly weaned off the oxygen but she did have to come home with oxygen, which was great for us because it meant she had a pulse ox on, so I wouldn't have to make sure she was breathing every 5 seconds, thank you post-partum anxiety. She lived on oxygen until Jan of 2019 and we were very excited to see the machine go!
We did have some feeding issues in the NICU and after, it took her a while to get to 100 percent feeds we worked with OT and PT for years on many things, but she's now where she needs to be just very tiny. To this day people do not believe she's almost 4, but she's getting there!
That was a rough overhaul of our life in the NICU, I could go on for days but that hits the major points. I am happy you are here and would love to answer any questions you may have! Thanks for reading!
Maurie
I would like to add that I wanted answers, I wanted to know why my body failed me, failed us. In the fall of 2019, I went to an endocrinologist who was able after months of testing diagnose me with Cushing's Disease. I had a tiny tumor on my pituitary gland that cause my body to go sideways when the stress of pregnancy was put on it. Moral of the story, never stop asking questions, it could save your life.
I'm Maurie a Cincinnati native who is probably made up of 75% Skyline. I have two children, Caroline (3) and Jackson (2) with my husband, David. Before anyone asks, we are both West Siders, I went to UC and he went to Xavier, the dinner table gets a little awkward around Crosstown Shootout time. Now that you know a little about me, here is my part of our story.
David and I were married in October of 2018, we found out we were pregnant at the end of November 2018, a little sooner than we had planned but we were excited nonetheless! One thing not a lot of people know about us is, that I had a miscarriage right before we got married, so getting pregnant again was scary and not something we were sure we wanted to do right away but things have a funny way of working out. Luckily everything for us was right on track with the pregnancy, we went in for the 20-week ultrasound and it was a girl! We were over the moon, well I was a little sour I lost our bet because I was convinced it was a boy, but that's beside the point, we were excited. When we went in for our 24-week appointment that's when things started to go downhill.
When the doctor came in she went over a few things and asked if I had noticed any swelling, I said yes, but I assumed that was normal. Which it is later on. She was concerned because I had gained a significant amount of weight since my last check so she had me do the 24-hour urine test, get blood drawn, and come back in a week. Well, my anxiety shot through the roof, I went home and googled what it could be and the first thing that came up was Preeclampsia. I didn't have an official diagnosis but I knew something wasn't right. By the way, NEVER google, it sends you down a rabbit hole of despair. We made it a week, the MA takes my blood pressure, and its 160/90, she asks me to lie down and that she will try again in a few minutes but before I could even sit down the doctor comes in and hands us admission papers. She said you need to go straight to Good Sam, the High-Risk team will be waiting for you. You have preeclampsia. Well, those words sucked to hear, at this point, we had no idea how severe it was or what our future looked like. All we knew is we made it to 25 weeks so they would at least try to save her if she came today.
We make it to the hospital and I honestly can't tell you how many people we had in the room with us. The ones I remember the most were the NICU doctors who gave us a very real yet very grim outlook on things. We knew we had to fight if she had any chance of surviving. Sparing some of the more gruesome details, I had severe preeclampsia with HELLP Syndrome. They started me on hypertensive protocol and a 48-hour magnesium drip (it was miserable). Oh by the time we got to the hospital my blood pressure was in the 200s, they had no idea how I was standing. Good news, we got my blood pressure under control and my labs were okay enough to come off the magnesium and see how things went. We were admitted on a Thursday and by Saturday morning things were looking okay, I even thought I would get to go home. HAHA, nope. I was here for the long haul until she decided to come. Saturday and Sunday were fairly good days, I even got moved out of high-risk to a room I would be in until she came.
Sunday afternoon rolls around and things are looking stable, so David goes home for the night because he had been by my side every moment and deserved to sleep in an actual bed. When the doctors come down for the daily ultrasound check, they see she's doing okay, and practicing breathing but her heart rate wasn't great, at this point they want to move me back up to L&D for monitoring to make sure she's okay. What I assumed would be a one-night thing turned into my last night pregnant. Before I was even in a new room, David was back and we made a plan. I would be on continuous monitoring for the night and if things looked better, I'd go back to the AOCU. It was a long night, she wiggled and moved and I started to feel worse, they had to give me multiple rounds of blood pressure meds and then I had a horrible headache come on. My doctor tried Tylenol and said if it doesn't go away in a few hours, we are going to have to take her because your brain is swelling and you could seize. Welp, that sounds like a blast. Unfortunately, the headache never went away and within 30 minutes, Caroline was born at 25 weeks and 4 days. She was 12 inches long and weighed 1 pound 6 ounces. All I remember before I passed out on the table was asking if she was alive, and she was. That's all the mattered. Somewhere in the midst of this, I muttered they pulled a footlong out of me!
She was alive and I was being put back together, while David followed the NICU team to the Unit to save our daughter, and so began our 106-day stay at Good Sam's NICU. Caroline fought like hell and I am happy to say she is a very spicy 3-year-old today! But her battle wasn't easy, she started intubated with an oscillator, which she was on until her lungs were strong enough to move to the Jet Vent (which is what you would think of, when you hear someone is intubated). We weren't able to hold her till she was off the oscillator, she was too fragile and frankly, I was scared of her, of breaking her but when the day came (2-weeks after birth) it was the best day. We could never get her numbers strong enough to extubate her, so we tried the DART protocol, which was a series of steroids that stepped down each day to help the inflammation in her lungs decrease and allow her to breathe more on her own. And it worked! She came off onto a C-PAP machine, we could finally see her face! She looked like a grumpy old man but she was our grumpy old man. Things were progressing well for her, we were fortunate to never deal with infections or NEC, our main focuses were her breathing, growing, eyes, and the PDA in her heart. Luckily her PDA closed, and she continued to improve breathing-wise, she stepped down to the high-flow cannula which was great because we got to hold her more and do more fun things with her! Unfortunately, she did develop ROP and had to have Avastin injections and laser eye surgery after we were released from Good Sam. She slowly weaned off the oxygen but she did have to come home with oxygen, which was great for us because it meant she had a pulse ox on, so I wouldn't have to make sure she was breathing every 5 seconds, thank you post-partum anxiety. She lived on oxygen until Jan of 2019 and we were very excited to see the machine go!
We did have some feeding issues in the NICU and after, it took her a while to get to 100 percent feeds we worked with OT and PT for years on many things, but she's now where she needs to be just very tiny. To this day people do not believe she's almost 4, but she's getting there!
That was a rough overhaul of our life in the NICU, I could go on for days but that hits the major points. I am happy you are here and would love to answer any questions you may have! Thanks for reading!
Maurie
I would like to add that I wanted answers, I wanted to know why my body failed me, failed us. In the fall of 2019, I went to an endocrinologist who was able after months of testing diagnose me with Cushing's Disease. I had a tiny tumor on my pituitary gland that cause my body to go sideways when the stress of pregnancy was put on it. Moral of the story, never stop asking questions, it could save your life.