It's also a really great way to reunite with our nurses and doctors and fellow NICU families. It's always a great day. Please consider walking or donating by clicking on the following link! Thank you!
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| Our family at the 2017 Miracle Walk |
Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts
Thursday, August 16, 2018
Mirace Walk 2018
Every year since Zadie was born, our family has participated in the Miracle Walk, which benefits the Saint Barnabas Medical Center Neonatal Intensive Care Unit (NICU), where Zadie was for 10 weeks following her birth in 2011. The doctors, nurses and staff are incredible there, and the Walk helps ensure that wonderful care continues!
It's also a really great way to reunite with our nurses and doctors and fellow NICU families. It's always a great day. Please consider walking or donating by clicking on the following link! Thank you!
It's also a really great way to reunite with our nurses and doctors and fellow NICU families. It's always a great day. Please consider walking or donating by clicking on the following link! Thank you!
Saturday, July 5, 2014
Third trachiversary
Today (July 5) is three years since Zadie had her trach placed. All day yesterday, I kept thinking of July 4th three years ago, when we were woken up by a phone call from Zadie's neonatologist. She had had a rough weekend, having lots of trouble breathing after her Gtube surgery a few days before. The morning of the 4th, the doctors decided she needed to be intubated and because of her tricky airway, they couldn't get the tube in. We had to give permission over the phone for her to be put under general anesthesia (for the second time in just a few days!) in order for them to intubate her. When we got to see her later, it was rough. That was probably the hardest day up to that point. Her little arms were pinned down to the bed so that she couldn't pull the tube out. I felt awful seeing her look at me, like she wanted me to help her. It was one of the worst days of my life, seeing her like that, and not knowing what was ahead of us.
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| July 4, 2011 |
Once she was intubated, Zadie's neonatologist, Dr. Ruben, was very nervous about her pulling the tube out, since she was a big, full term baby (much different than the preemies she was surrounded by in the NICU). Seeing an experienced NICU doctor nervous definitely made me nervous! She told us that day that Zadie needed a tracheostomy. This was the first time that a trach was even mentioned to us. It wasn't a suggestion or something to be discussed. It just what was going to happen, and as fast as possible. When the surgeon said he didn't have time until two days later, Dr. Ruben pushed him to make time the next day.
So, on July 5, 2011, at 5 weeks old, Zadie had her trach placed. It was the first day since the day she was born that she didn't have any tubes or tape on her face. I had been wishing for it to be gone, but I didn't want it this way. Still, it was wonderful to see her pretty face and for her to be able to be on her back comfortably (with her breathing issues, she had to be on her side or belly in order for her to breathe properly.)
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| July 5, 2011 |
Fast forward three years, Zadie's a big sister (still working on being gentle), a little sister (annoying her big brother every chance she can get) and does just about everything any other 3 year old does. Today, she went swimming! I can't wait until she gets the trach out, but she's doing just fine with it. Next step...sleep study on Thursday night!
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| July 5, 2014 |
Thursday, August 9, 2012
One year at home...
Today is the day, a year ago, that Zadie finally got to come home from the hospital! Leaving her there when I was discharged was one of the hardest things I'd ever done! I always heard about babies having to stay in the NICU, and I always said I couldn't imagine how hard that would be. Unfortunately, I found out. What made it a million times worse was that almost every day when I went to the hospital to see Zadie, I'd see a beaming mom sitting in a wheelchair, holding her tiny bundle of joy, waiting for dad or whoever to bring the car around. It really was like a knife to the heart to see that, every time. It never got easier. I often wished that there was some secret NICU parent entrance so we didn't have to pass by that scene every day. I also realized how lucky I was that I got to experience that once. I was that beaming mom holding my little Jonathan just three years earlier. It was a long ten weeks, and I couldn't believe the day had finally come where they would release Zadie!
It was torrentially raining that day, and when we got home, the director of nursing of the home care agency and four nurses were waiting to be oriented on Zadie's case. From that day on, we've had nurses in the house 16 hours a day almost every day.
So much has changed in the last year! Zadie has grown, of course, and is happy and healthy and on the go. She's been back in the hospital a few times. She no longer has a cleft palate. She's eating and drinking by mouth, although still uses her tube overnight (mostly because we haven't gotten the orders changed). We are old pros at changing trach ties, changing the trach itself, getting it back in if it gets pulled out, changing her Mic-key button (feeding tube), putting that back in if it gets pulled out.
Maybe, just maybe, in a year from now, Zadie will have put a lot of this behind her!
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| Zadie with one of her favorite NICU nurses, Patty |
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| Zadie's neonatologist, Dr. Ruben, sending her off |
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| Proud big brother with his baby sister home for the first time! |
It was torrentially raining that day, and when we got home, the director of nursing of the home care agency and four nurses were waiting to be oriented on Zadie's case. From that day on, we've had nurses in the house 16 hours a day almost every day.
So much has changed in the last year! Zadie has grown, of course, and is happy and healthy and on the go. She's been back in the hospital a few times. She no longer has a cleft palate. She's eating and drinking by mouth, although still uses her tube overnight (mostly because we haven't gotten the orders changed). We are old pros at changing trach ties, changing the trach itself, getting it back in if it gets pulled out, changing her Mic-key button (feeding tube), putting that back in if it gets pulled out.
Maybe, just maybe, in a year from now, Zadie will have put a lot of this behind her!
Thursday, July 5, 2012
Happy Trachiversary!
Today marks one year since Zadie was trached. A year ago yesterday, on the 4th of July, we were woken up by a call from the hospital. That's never good. But the call was a few days coming.
On June 30 of 2011, Zadie had a G tube surgically placed. Her eating hadn't progressed enough and the hospital wouldn't send her home with a nasogastric (NG) tube, the temporary one that goes through the nose to the stomach. They didn't want to keep her in the hospital just for eating issues, so it was decided that she'd get a G tube.
She went through the surgery just fine. It was scary for us to leave her with the surgeon and anesthesiologist, but it went quick. She was intubated for the surgery, meaning she had a tube inserted down her throat to help her breathe through the surgery. Since she had such a tricky airway (part of her condition, Pierre Robin Sequence, causes the airway to be funky), they were worried about intubating her, but didn't have trouble once she was under anesthesia. They extubated her (removed the breathing tube) the following day. She had always had trouble breathing in certain positions, but before the G tube surgery, if she was laying on her belly or her side, she was ok. She also had a nasopharnygeal (NP) tube, also known as a trumpet, inserted in her nose when she was about 10 days old. The purpose of that was to help keep her airway open more.
Now, after the G tube surgery, she was pretty miserable. Not breathing easily in any position, and her oxygen saturations were not great. The surgery was on Thursday, she was extubated on Friday, and by Sunday morning the 3rd, she was on oxygen. She was holding her own, though, and we kept being reassured that her airway was probably just swollen from the intubation. I kept asking if the intubation possibly damaged her airway, but the doctors kept saying it was just swollen.
So, on the morning of the 4th of July, we were woken up by a call from Dr. Ruben, Zadie's neonatologist. She said that Zadie's breathing had worsened to the point that they needed to intubate her again. They tried to do it while she was awake, but were unable to, so they had to put her under for it. Since we weren't there, we had to give our permission over the phone for her to go under anesthesia to be intubated. During that phone call, Dr. Ruben also told us that Zadie would need a tracheostomy as soon as possible. This was the first time we had heard that word in relation to Zadie!
When we went to see Zadie later on, she was already out of anesthesia and intubated. They had her little hands pinned down to the bed so that she couldn't pull the tube out. She was looking at me like she wanted me to help her. That was probably the hardest day of all the days in the NICU. It was the first time I was afraid that we were going to lose her. I was crying and trying to get the nerve to ask a question that was floating around in my head. I finally got the nerve and asked, "Is she going to be ok?" Her nurse just looked at the doctor, who said, "Her problems are all mechanical. She's not a sick baby. We just need to fix her mechanical problems." The fact that she didn't say, "Yes, she'll be fine" was not lost on me, but I did feel better having asked.
Since it was 4th of July, it was hard for even the doctors to get a hold of the surgeon. When they finally did, he said he could do the trach surgery on Wednesday, the 6th. Zadie's doctor wasn't satisfied with that. She insisted he do it the next day, on the 5th. The fact that she was so nervous and anxious to get the surgery done made me very anxious and nervous! The doctors in the NICU were used to little bitty preemies, not robust full termers who could easily pull out tubes. Zadie's doctor was very nervous that Zadie would pull out her tube and it would be so difficult for them to get it back in, that it might be a very bad situation.
So, on July 5, 2011, we walked our sweet little girl down to the OR for the second time in 5 days and she was put under anesthesia for the third time in 5 days. Again, the surgery went quick and she did well. When we got to see her, it was like seeing a different baby! She was laying on her back (previously had always been on her belly or side) and she just seemed happier and more comfortable than she had ever been in her 5 short weeks on earth.
When I think back to that time, I realize how little of a clue I had about what lay ahead. I understood what a trach was, I knew some people had them for awhile, but I could never have predicted what our life would turn out to be like. I hope that Zadie is able to lose the trach by her next trachiversary, but I'll be ok with it if she's not. It saved her life.
On June 30 of 2011, Zadie had a G tube surgically placed. Her eating hadn't progressed enough and the hospital wouldn't send her home with a nasogastric (NG) tube, the temporary one that goes through the nose to the stomach. They didn't want to keep her in the hospital just for eating issues, so it was decided that she'd get a G tube.
She went through the surgery just fine. It was scary for us to leave her with the surgeon and anesthesiologist, but it went quick. She was intubated for the surgery, meaning she had a tube inserted down her throat to help her breathe through the surgery. Since she had such a tricky airway (part of her condition, Pierre Robin Sequence, causes the airway to be funky), they were worried about intubating her, but didn't have trouble once she was under anesthesia. They extubated her (removed the breathing tube) the following day. She had always had trouble breathing in certain positions, but before the G tube surgery, if she was laying on her belly or her side, she was ok. She also had a nasopharnygeal (NP) tube, also known as a trumpet, inserted in her nose when she was about 10 days old. The purpose of that was to help keep her airway open more.
Now, after the G tube surgery, she was pretty miserable. Not breathing easily in any position, and her oxygen saturations were not great. The surgery was on Thursday, she was extubated on Friday, and by Sunday morning the 3rd, she was on oxygen. She was holding her own, though, and we kept being reassured that her airway was probably just swollen from the intubation. I kept asking if the intubation possibly damaged her airway, but the doctors kept saying it was just swollen.
So, on the morning of the 4th of July, we were woken up by a call from Dr. Ruben, Zadie's neonatologist. She said that Zadie's breathing had worsened to the point that they needed to intubate her again. They tried to do it while she was awake, but were unable to, so they had to put her under for it. Since we weren't there, we had to give our permission over the phone for her to go under anesthesia to be intubated. During that phone call, Dr. Ruben also told us that Zadie would need a tracheostomy as soon as possible. This was the first time we had heard that word in relation to Zadie!
When we went to see Zadie later on, she was already out of anesthesia and intubated. They had her little hands pinned down to the bed so that she couldn't pull the tube out. She was looking at me like she wanted me to help her. That was probably the hardest day of all the days in the NICU. It was the first time I was afraid that we were going to lose her. I was crying and trying to get the nerve to ask a question that was floating around in my head. I finally got the nerve and asked, "Is she going to be ok?" Her nurse just looked at the doctor, who said, "Her problems are all mechanical. She's not a sick baby. We just need to fix her mechanical problems." The fact that she didn't say, "Yes, she'll be fine" was not lost on me, but I did feel better having asked.
Since it was 4th of July, it was hard for even the doctors to get a hold of the surgeon. When they finally did, he said he could do the trach surgery on Wednesday, the 6th. Zadie's doctor wasn't satisfied with that. She insisted he do it the next day, on the 5th. The fact that she was so nervous and anxious to get the surgery done made me very anxious and nervous! The doctors in the NICU were used to little bitty preemies, not robust full termers who could easily pull out tubes. Zadie's doctor was very nervous that Zadie would pull out her tube and it would be so difficult for them to get it back in, that it might be a very bad situation.
So, on July 5, 2011, we walked our sweet little girl down to the OR for the second time in 5 days and she was put under anesthesia for the third time in 5 days. Again, the surgery went quick and she did well. When we got to see her, it was like seeing a different baby! She was laying on her back (previously had always been on her belly or side) and she just seemed happier and more comfortable than she had ever been in her 5 short weeks on earth.
When I think back to that time, I realize how little of a clue I had about what lay ahead. I understood what a trach was, I knew some people had them for awhile, but I could never have predicted what our life would turn out to be like. I hope that Zadie is able to lose the trach by her next trachiversary, but I'll be ok with it if she's not. It saved her life.
Thursday, May 31, 2012
Happy Birthday, Zadie!
I really can't believe a whole year has gone by since the day Zadie entered our lives. It's been quite the crazy year. I thought today, I'd share more of what we all went through that day. Because while it was one of the best days of my life, it was also a pretty horrible day at times.
Anyway, I got to hold her and she looked so much like Jonathan!
Next, I had to be closed up and Zadie went off to the nursery to be taken care of. BJ went with her, and later came to see me in recovery. When I was ready to go up to my room, they called for transport. It took FOREVER. It took so long that BJ actually went to the newborn nursery and "stole" Zadie away so that I could see her. Later on that day, I would be SO happy that he did that.
I was finally taken up to my room on the 6th floor. Since I had given birth to Jonathan in the same hospital, almost exactly three years earlier, they had changed a lot. All maternity rooms were now private, there were no set visiting hours, and you could have as many visitors as you liked. I was looking forward to these changes, since the day Jonathan was born, I had a roommate and they were strict about the two visitors at a time rule. My room looked like a hotel suite. My sister-in-law brought Jonathan later on in the afternoon, along with my niece and nephew, Stevi and Nicholas (future Godparents, although no one knew that at the time). My father-in-law also came. Meanwhile, we were all (im)patiently waiting for Zadie to be brought to the room. I called my nurse several times asking where Zadie was. Finally, I was told to call the newborn nursery to ask.
I gave birth to Zadie at 11 am. At this point, it was probably around 5 pm. I called the nursery and was put on hold. When the nurse came back on the line, she said, "oh, they tried to feed her, and she didn't do well, so she's going to the NICU." That was the beginning of one of the best days of my life being turned into one of the worst. BJ was out of the room at the time and he came back in to see me sobbing on the phone. I could just barely tell him that she was ok so that I didn't freak him out even more. Even worse, BJ couldn't go see her immediately. They had to set her up in the NICU, so he had to wait for about an hour. He finally got to see her and reassured me that she was ok.
Meanwhile, a plastic surgeon from the craniofacial team at St. Barnabas had been called in by Zadie's pediatrician. He examined her and was the one who diagnosed her with Pierre Robin Sequence. He told us that she would have to stay until she learned to eat on her own. I asked him how long he expected that to take, and he said maybe several days to a week. A week! Just the idea of her being in the hospital for a week killed me. Again, if only we had known what we had ahead of us!
Since I had a C section, I couldn't get out of bed for 12 hours from the surgery, so that meant I had to wait until 11 pm. I was able to be wheeled down in a wheelchair to see my little girl. She was sleeping, but hooked up to all sorts of tubes and wires. It was a relief to see her, but so sad to know I couldn't hold her or feed her or even sleep near her. Unfortunately, the NICU is on the 3rd floor and I was on the 6th floor, so I was about as far away from her as I could have been. And this is how I left Zadie on her first day of life.
I'm so grateful that tonight, I get to tuck her into her own crib right down the little hall from our bedroom and tomorrow morning I get to get her up and play with her and feed her. Happy birthday, sweet baby girl. You've come so far in the past year and I can only imagine what you'll accomplish in the next year!
I had a scheduled C section for two reasons. One reasons was because I had had a C with Jonathan and the other was the fact that I had so much fluid and they didn't know why. Once they got me open, they were suctioning out all the fluid. My level of fluid was amazing to everyone in the room, and they had to get a second suction canister. My doctor told me I had 2 1/2 liters of fluid, which apparently is a lot. Next, to get Zadie out, there was a lot of pulling and pushing. She was out! It's a girl! I teared up a little when I heard those words. Lots of hair, just like when Jonathan came out. They brought her over to the exam table and the neonatologist examined her. BJ went over to take pictures and I saw the doctor talking to him. I heard "cleft palate" and I was trying to hear more. I finally caught BJ's eye and asked, "is she ok?" He smiled and said, "she's fine!" He told me that the doctor said she had a small cleft palate, but that it wasn't a huge concern. There would be surgery down the line. My OB further reassured me, saying she hadn't even seen it (not that she necessarily would). If only anyone had any clue what we all had ahead of us!
Anyway, I got to hold her and she looked so much like Jonathan!
I was finally taken up to my room on the 6th floor. Since I had given birth to Jonathan in the same hospital, almost exactly three years earlier, they had changed a lot. All maternity rooms were now private, there were no set visiting hours, and you could have as many visitors as you liked. I was looking forward to these changes, since the day Jonathan was born, I had a roommate and they were strict about the two visitors at a time rule. My room looked like a hotel suite. My sister-in-law brought Jonathan later on in the afternoon, along with my niece and nephew, Stevi and Nicholas (future Godparents, although no one knew that at the time). My father-in-law also came. Meanwhile, we were all (im)patiently waiting for Zadie to be brought to the room. I called my nurse several times asking where Zadie was. Finally, I was told to call the newborn nursery to ask.
I gave birth to Zadie at 11 am. At this point, it was probably around 5 pm. I called the nursery and was put on hold. When the nurse came back on the line, she said, "oh, they tried to feed her, and she didn't do well, so she's going to the NICU." That was the beginning of one of the best days of my life being turned into one of the worst. BJ was out of the room at the time and he came back in to see me sobbing on the phone. I could just barely tell him that she was ok so that I didn't freak him out even more. Even worse, BJ couldn't go see her immediately. They had to set her up in the NICU, so he had to wait for about an hour. He finally got to see her and reassured me that she was ok.
Meanwhile, a plastic surgeon from the craniofacial team at St. Barnabas had been called in by Zadie's pediatrician. He examined her and was the one who diagnosed her with Pierre Robin Sequence. He told us that she would have to stay until she learned to eat on her own. I asked him how long he expected that to take, and he said maybe several days to a week. A week! Just the idea of her being in the hospital for a week killed me. Again, if only we had known what we had ahead of us!
Since I had a C section, I couldn't get out of bed for 12 hours from the surgery, so that meant I had to wait until 11 pm. I was able to be wheeled down in a wheelchair to see my little girl. She was sleeping, but hooked up to all sorts of tubes and wires. It was a relief to see her, but so sad to know I couldn't hold her or feed her or even sleep near her. Unfortunately, the NICU is on the 3rd floor and I was on the 6th floor, so I was about as far away from her as I could have been. And this is how I left Zadie on her first day of life.
I'm so grateful that tonight, I get to tuck her into her own crib right down the little hall from our bedroom and tomorrow morning I get to get her up and play with her and feed her. Happy birthday, sweet baby girl. You've come so far in the past year and I can only imagine what you'll accomplish in the next year!
Thursday, February 2, 2012
No real direction yet...
I've been wanting to start blogging about Zadie's condition and continuing progress. I'm finally doing it!
A quick recap - Zadie is now 8 months old and was diagnosed with Pierre Robin Sequence the day she was born. She has a cleft palate and micrognathia (an underdeveloped lower jaw), which makes her tongue fall back into her airway, making both breathing and eating difficult. She spent 10 weeks in the NICU, and has a G-tube (feeding tube) and a trach. She used to take some milk by bottle, but now takes 100% by the tube. We're working on spoon feeding now! Because of the trach, she doesn't make any sounds. I never imagined that I would wish to be able to hear my baby screaming her lungs out, but I can't wait for that day!
Other than her main limitations (which are temporary!), Zadie is a very typical 8 month old. She's almost crawling, and she just started pulling herself up yesterday. She loves her new skill, but we're still encouraging crawling! She's also very healthy. She's only been hospitalized once since she came home (that's good for a baby with a trach!) and hasn't had any ear infections (knock on wood). She does have fluid in her ears, which is almost expected with the cleft palate, but it is affecting her hearing. She'll probably be getting tubes soon.
As for the title of this post, we're still kind of up in the air as to the course of action for Zadie, and it makes me more and more nervous as she gets older. She will definitely need her palate repaired, and that will be done somewhere around her first birthday. But, there are other things in play and different opinions about the best thing to do. We've seen three craniofacial teams, St. Barnabas, St. Joseph's, and CHOP. They all pretty much have a different idea of what to do, and none of them seem to have stepped up to say, we're the best ones to take care of your daughter. So we're still trying to figure out what to do. It's a scary situation to have to decide for your little baby which direction to go in, when our decisions will likely have a huge impact on her life. Right now, we're just trying to keep on top of everything and hope that the right course will be revealed.
A quick recap - Zadie is now 8 months old and was diagnosed with Pierre Robin Sequence the day she was born. She has a cleft palate and micrognathia (an underdeveloped lower jaw), which makes her tongue fall back into her airway, making both breathing and eating difficult. She spent 10 weeks in the NICU, and has a G-tube (feeding tube) and a trach. She used to take some milk by bottle, but now takes 100% by the tube. We're working on spoon feeding now! Because of the trach, she doesn't make any sounds. I never imagined that I would wish to be able to hear my baby screaming her lungs out, but I can't wait for that day!
Other than her main limitations (which are temporary!), Zadie is a very typical 8 month old. She's almost crawling, and she just started pulling herself up yesterday. She loves her new skill, but we're still encouraging crawling! She's also very healthy. She's only been hospitalized once since she came home (that's good for a baby with a trach!) and hasn't had any ear infections (knock on wood). She does have fluid in her ears, which is almost expected with the cleft palate, but it is affecting her hearing. She'll probably be getting tubes soon.
As for the title of this post, we're still kind of up in the air as to the course of action for Zadie, and it makes me more and more nervous as she gets older. She will definitely need her palate repaired, and that will be done somewhere around her first birthday. But, there are other things in play and different opinions about the best thing to do. We've seen three craniofacial teams, St. Barnabas, St. Joseph's, and CHOP. They all pretty much have a different idea of what to do, and none of them seem to have stepped up to say, we're the best ones to take care of your daughter. So we're still trying to figure out what to do. It's a scary situation to have to decide for your little baby which direction to go in, when our decisions will likely have a huge impact on her life. Right now, we're just trying to keep on top of everything and hope that the right course will be revealed.
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