After 9 days in the hospital, with about 4 of them being somewhat harrowing, I got released yesterday!!! I get to be back home but with daily monitoring at the hospital to make sure this baby continues to do okay. We have, for the time being, averted disaster. I feel like this is truly a miracle...a week and a half ago, we were prepared to deliver a very premature baby and now I am inching closer to 30 weeks.
I am enormously grateful to all of my family and friends...who called, prayed, visited, and helped keep things moving at home. I came home yesterday to a clean house with laundry done and folded, the refrigerator clean and stocked with enough to keep us fed for a couple days, and well-cared for children. My in-laws made that possible and I am so grateful to them for that. My parents both came up and stayed with me in the hospital (I now know that my father can be awoken out of any sleep by a change in a baby's heartrate on a monitor), foresaking their own comfort to sleep in pull-out hospital chairs and ensuring I got a daily (decaf!) Starbucks coffee. Jared was, as always, a rock, trekking between home and work and the hospital and bringing me any number of things and remembering to bring things I needed but wouldn't have thought of on my own.
It was a wonderful feeling to arrive at the kids' preschool yesterday and surprise them at pickup. They weren't expecting me. Last night, Charlie sat with me in the rocker for the longest time, giving me an enormous hug. This is where my heart is, for sure.
I will say, every time we meet one of these crises, God honestly doesn't let us down. Despite my best efforts, I do have moments of wondering what in the world He is trying to show me...and then somehow, we make it through and I realize...it's not always up to me to control. Cincinnati will wait until May for Charlie and I have faith that we will make it through the rest of this winter and early spring in one piece.
Showing posts with label premature birth. Show all posts
Showing posts with label premature birth. Show all posts
Thursday, February 2, 2012
Tuesday, January 24, 2012
Balancing Act
There are days when things are running by so smoothly and then bam, it seems it comes from all sides. After a smooth Christmas season, 2012 hit us like a ton of bricks and hasn't really stopped.
So, one of the challenges with Charlie is that whenever he has a virus or illness, his GI system just shuts down. We can't feed him through his j-tube because it just leaks right back out, including bile, which in turn irritates and blisters his skin. He is already really small and we don't have weight that we can lose. So, during sick season, we are often in a get sick, lose weight, get better, catch up phase. We don't make much progress. It can be very frustrating as when he is well, things seem to be okay...and they can turn on a dime and it disrupts everything. The balancing act is trying to keep him hydrated during the time he isn't eating, avoid a hospital stay and get his GI tract moving again. It is a frustrating process with a lot of ups and downs, steps forward, steps back. He got a mild virus on New Years and we struggled with him for the next 2-3 weeks. During that time, we were advised that it might be time to go to a hospital where they have more specialty in this area and that Charlie overall seems to be getting worse, not better, with his GI motility. Unfortunately, that place is more than halfway across the country. We are working on getting him in there and hoping that they have some treatment options that can help improve things for him, especially when he is sick.
This pregnancy has been going so well. No problems whatsoever. In fact, most often, it is the furthest thing from my mind as my hands are full with my two very active little boys! Well, on Sunday, all of that changed. Jared had just returned from San Diego and I was packing to leave to San Diego in the morning. This is a very busy time at work for me. I hadn't felt the baby move since early that morning. I tried to get kick counts that evening and I couldn't get him to move at all. We watched a show, I tried a few different positions and still nothing. I have a home Doppler, so I then got it out for reassurance that he was just sleepy. Usually, that thing has to only come near my belly and I can hear him loud and clear. Not this time. I tried and tried and could not find a heartbeat. Finally, in a panic, I called my dad and he advised me to head to Labor and Delivery to check things out. I've never been so scared as I was driving over there. Unfortunately, Jared had to stay with Charlie and couldn't come with me. I was praying and willing the baby to move the entire drive to the hospital. When I got there, they also had trouble finding him on the monitors. Fortunately, we were able to get a nice, reassuring shot of a beating heart on the ultrasound. I was so relieved. They decided to put him on monitoring for 20 minutes because I had reported the decreased fetal movement. During that monitoring, it showed our little guy is having a little bit of a hard time tolerating his environment. So, I got admitted and preparations began for the possible need to deliver our baby at 28 weeks. Now, we have had a preterm infant before and we have no desire to repeat that experience. That was at 34 weeks, which is a very different landscape than 28 weeks. We also have two children at home now, which we didn't when Jack was born.
We are lucky to be in a hospital with great care and great doctors who are trying to get us to the best outcome possible. We started steroids for the baby's lungs early on Monday morning and magnesium sulphate to help protect the baby's brain against damage if he were to be born early. My parents flew up to be with me and Jared's parents drove up to help care for Jack and Charlie. We are currently in a waiting pattern, monitoring the baby and seeing what he does. I'm stuck here in the hospital for the foreseeable future and Jared and I are trying to figure out this huge, seemingly insurmountable balancing act...two jobs, kids, therapy appointments, doctor appointments, and anything else that can happen in between, such as, say, Charlie getting a virus. Not to mention that, clearly, we aren't headed anywhere across the country for Charlie. To say that I am completely overwhelmed by this new balancing act would be putting it mildly. I feel terrible that we are having to make choices like postponing when we get Charlie care, how to get Jack to and from therapy appointments, whether it will even be feasible for Jared to attend the birth of this baby, etc. Not to mention that I could be here for weeks and weeks and not see my kids much.
So, that is where we are at. I never saw this coming. I have faith and hope we will figure this out. We are blessed with wonderful family, friends and employers. But I am completely overwhelmed by the logistics.
So, one of the challenges with Charlie is that whenever he has a virus or illness, his GI system just shuts down. We can't feed him through his j-tube because it just leaks right back out, including bile, which in turn irritates and blisters his skin. He is already really small and we don't have weight that we can lose. So, during sick season, we are often in a get sick, lose weight, get better, catch up phase. We don't make much progress. It can be very frustrating as when he is well, things seem to be okay...and they can turn on a dime and it disrupts everything. The balancing act is trying to keep him hydrated during the time he isn't eating, avoid a hospital stay and get his GI tract moving again. It is a frustrating process with a lot of ups and downs, steps forward, steps back. He got a mild virus on New Years and we struggled with him for the next 2-3 weeks. During that time, we were advised that it might be time to go to a hospital where they have more specialty in this area and that Charlie overall seems to be getting worse, not better, with his GI motility. Unfortunately, that place is more than halfway across the country. We are working on getting him in there and hoping that they have some treatment options that can help improve things for him, especially when he is sick.
This pregnancy has been going so well. No problems whatsoever. In fact, most often, it is the furthest thing from my mind as my hands are full with my two very active little boys! Well, on Sunday, all of that changed. Jared had just returned from San Diego and I was packing to leave to San Diego in the morning. This is a very busy time at work for me. I hadn't felt the baby move since early that morning. I tried to get kick counts that evening and I couldn't get him to move at all. We watched a show, I tried a few different positions and still nothing. I have a home Doppler, so I then got it out for reassurance that he was just sleepy. Usually, that thing has to only come near my belly and I can hear him loud and clear. Not this time. I tried and tried and could not find a heartbeat. Finally, in a panic, I called my dad and he advised me to head to Labor and Delivery to check things out. I've never been so scared as I was driving over there. Unfortunately, Jared had to stay with Charlie and couldn't come with me. I was praying and willing the baby to move the entire drive to the hospital. When I got there, they also had trouble finding him on the monitors. Fortunately, we were able to get a nice, reassuring shot of a beating heart on the ultrasound. I was so relieved. They decided to put him on monitoring for 20 minutes because I had reported the decreased fetal movement. During that monitoring, it showed our little guy is having a little bit of a hard time tolerating his environment. So, I got admitted and preparations began for the possible need to deliver our baby at 28 weeks. Now, we have had a preterm infant before and we have no desire to repeat that experience. That was at 34 weeks, which is a very different landscape than 28 weeks. We also have two children at home now, which we didn't when Jack was born.
We are lucky to be in a hospital with great care and great doctors who are trying to get us to the best outcome possible. We started steroids for the baby's lungs early on Monday morning and magnesium sulphate to help protect the baby's brain against damage if he were to be born early. My parents flew up to be with me and Jared's parents drove up to help care for Jack and Charlie. We are currently in a waiting pattern, monitoring the baby and seeing what he does. I'm stuck here in the hospital for the foreseeable future and Jared and I are trying to figure out this huge, seemingly insurmountable balancing act...two jobs, kids, therapy appointments, doctor appointments, and anything else that can happen in between, such as, say, Charlie getting a virus. Not to mention that, clearly, we aren't headed anywhere across the country for Charlie. To say that I am completely overwhelmed by this new balancing act would be putting it mildly. I feel terrible that we are having to make choices like postponing when we get Charlie care, how to get Jack to and from therapy appointments, whether it will even be feasible for Jared to attend the birth of this baby, etc. Not to mention that I could be here for weeks and weeks and not see my kids much.
So, that is where we are at. I never saw this coming. I have faith and hope we will figure this out. We are blessed with wonderful family, friends and employers. But I am completely overwhelmed by the logistics.
Wednesday, July 23, 2008
Please Pray...
I posted earlier about Tricia and Nate Lawrenson's journey through cystic fibrosis, lung transplant, and the very premature birth of their daughter, Gwyneth. They've been blessed with a lot of miracles in the past year and they need another one. Tricia developed a type of post-transplant cancer, which did not respond well to the first round of chemo. She is facing a much harder road of treatment. Please pray for her health, her ability to face the treatment with the same resolve she has approached everything else in her life, and for a good response to the treatment.
Thursday, July 17, 2008
Confessions of a CF Husband
I wanted to take a moment today to share a blog that I've been following for a while now--we have a link to it on the side of this blog. It's an AMAZING story about a man, Nate, and his wife Tricia and the journey they've been on for the past year (well, they've been on the journey for longer than that but the past year is the part I've been reading).
A brief synopsis of their story: Tricia was diagnosed with Cystic Fibrosis as a child. For anyone reading this who doesn't know anything about Cystic Fibrosis, it is a genetic disease that causes mucus to build up in organs (especially the lungs), inhibiting the ability to breathe and resulting in deadly infections. There is no cure for CF and many people die young from the disease. Tricia and Nate married and she harbored a secret wish to have a baby. However, her health was declining and they were beginning to prepare for a double-lung transplant when she found out she was pregnant. Because her lung functions were so compromised, carrying the baby was extremely risky. In January, Gwyneth Rose was born at 24+4 weeks gestation--weighing just 1 lb 6 ozs! In the months that followed, miraculously, Tricia received her lung transplant and baby Gwyneth beat the odds and was discharged from the NICU and is now growing at home with her daddy, mommy and mommy's new lungs.
This story is one of courage, amazing faith, and hope. Through all of the ups and downs, Nate has faithfully shared his story with the world and their attitudes toward their journey has been humbling, to say the least. These are people who, instead of bemoaning their circumstances are on a mission to educate people about CF, premature birth, and their faith in God.
I started following this story when I was pregnant with Jack and during times when I was scared and unsure of how things were going to turn out, when it seemed like we got a lot of bad news at our prenatal visits, their story refocused my faith and reminded me that the greatest miracles happen with you relinquish control and turn it over to God. When Jack was born early, as we had anticipated, I knew some of the things to expect from the NICU stay from their experiences.
Since I've been reading this for so long, and have benefitted from the story, we felt led to help the CF cause and donate to Nate and Tricia's team for the Great Strides (CF) Walk. I encourage anyone reading this to read their story and try to help them meet their goal.
Thanks for sharing your story with the world, Nate!
A brief synopsis of their story: Tricia was diagnosed with Cystic Fibrosis as a child. For anyone reading this who doesn't know anything about Cystic Fibrosis, it is a genetic disease that causes mucus to build up in organs (especially the lungs), inhibiting the ability to breathe and resulting in deadly infections. There is no cure for CF and many people die young from the disease. Tricia and Nate married and she harbored a secret wish to have a baby. However, her health was declining and they were beginning to prepare for a double-lung transplant when she found out she was pregnant. Because her lung functions were so compromised, carrying the baby was extremely risky. In January, Gwyneth Rose was born at 24+4 weeks gestation--weighing just 1 lb 6 ozs! In the months that followed, miraculously, Tricia received her lung transplant and baby Gwyneth beat the odds and was discharged from the NICU and is now growing at home with her daddy, mommy and mommy's new lungs.
This story is one of courage, amazing faith, and hope. Through all of the ups and downs, Nate has faithfully shared his story with the world and their attitudes toward their journey has been humbling, to say the least. These are people who, instead of bemoaning their circumstances are on a mission to educate people about CF, premature birth, and their faith in God.
I started following this story when I was pregnant with Jack and during times when I was scared and unsure of how things were going to turn out, when it seemed like we got a lot of bad news at our prenatal visits, their story refocused my faith and reminded me that the greatest miracles happen with you relinquish control and turn it over to God. When Jack was born early, as we had anticipated, I knew some of the things to expect from the NICU stay from their experiences.
Since I've been reading this for so long, and have benefitted from the story, we felt led to help the CF cause and donate to Nate and Tricia's team for the Great Strides (CF) Walk. I encourage anyone reading this to read their story and try to help them meet their goal.
Thanks for sharing your story with the world, Nate!
Tuesday, July 15, 2008
Little Grads
We had a great weekend this past weekend. On Saturday, Grammy and Grampy came for a visit and to go to the Little Grads Picnic (NICU Reunion). It was wonderful to see all of Jack's nurses and doctors and some of our friends from the NICU. There were over 1,000 people there! It was so heartwarming to see how well these babies have done! The picnic reminded both me and Jared how lucky we were to have kept Jack in for as long as we did--but it also a lot of fun to see how far he's come since his days in the hospital. We have a lot to be thankful for!
Here are some of the highlights from the day:
Jack and C.P, his very first nurse!:
Jack and J., one of his primary nurses:
This is V., who was Jack's "neighbor" for most of her stay. She was a 24-weeker who went home about 3 weeks after Jack and She's doing great. Her mom and I got to be friendly during our stay.
Here's me and Jack with Grammy!
Finally, just Jack, being cute:
Here are some of the highlights from the day:
Jack and C.P, his very first nurse!:
Jack and J., one of his primary nurses:
This is V., who was Jack's "neighbor" for most of her stay. She was a 24-weeker who went home about 3 weeks after Jack and She's doing great. Her mom and I got to be friendly during our stay.
Here's me and Jack with Grammy!
Finally, just Jack, being cute:
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