Sunday, February 28, 2010
Friday, February 26, 2010
The New Normal
Whew! Life has been completely crazy, wonderful, frustrating, joyful, exhausting, and blessed all at the same time. We have been trying to adjust to life with a "newborn" in the house again. I'm not going to lie-we had grown pretty accustomed to our sweet girl who sleeps through the night, entertains herself easily, and often feeds herself.
But, we have worked out a pretty good routine, and things have settled down significantly. It is definitely a challenge to not only keep up with two babies now, but to keep up with all our son's medications, take his blood pressure every few hours, and make sure he is getting enough to eat (this kid likes to eat!). On top of all that, he came home with thrush, making the first week home an even greater challenge. Now, however, we finally have him on a medication that has just about cleared it up, so he is much less fussy.
Right now, he is eating every 2-3 hours, and he eats a lot. Most times, he breastfeeds, then drinks a two ounce bottle, then 2 hours later is ready to eat again. Now that he is feeling better, he is sleeping a lot, and growing big and strong. We have to check his blood pressure frequently to make sure that it does not bottom out, and he for now he is on three different medications. The nephrologist saw him this week and said his blood pressure is looking good, but it is still not quite low enough to try weaning him off the medications. We will check back again in two weeks and see how he's doing. And of course, we are trying to get as much sleep as possible, so my husband and I take turns during the night, and so far it's working well. We have also been watching his growth and weight carefully, and in the last week, he gained half a pound. He is now up to 9 pounds, 8 ounces. His pediatrician was so excited and said he is doing great!
We also met with Early Childhood Intervention today, and they were incredibly impressed with how he is doing. They completed an evaluation to determine if he qualifies for services (physical or occupational therapy, nutritionist, etc.). They looked at all sorts of different things, such as how he is eating as well as his fine and gross motor skills, and determined him to be at a 2-3 month old level cognitively and developmentally (he is 3 months old). They were so amazed at how he is eating, how big he is, and what he is doing these days, and based on the evaluation, he was not even far enough behind to qualify for ECI services! Because he was 12 weeks premature and had a host of medical conditions, however, they are allowing him to receive services, so we are very thankful for that! I will take all the extra help I can get for him. And, it will not cost us anything, for which we are incredibly grateful!!
To see him and interact with him, you would never ever know all the difficulties he has faced, or that he was born at only 28 weeks. It is such a joy to be all together as a family and feel like our life can finally get back to normal. Well, for now, it's a new normal. But that's ok. We are trying to cherish each and every moment, because we have three months of lost time with our son to catch up on!
Here are some pictures from Valentine's Day-the last day that my babies were apart.
But, we have worked out a pretty good routine, and things have settled down significantly. It is definitely a challenge to not only keep up with two babies now, but to keep up with all our son's medications, take his blood pressure every few hours, and make sure he is getting enough to eat (this kid likes to eat!). On top of all that, he came home with thrush, making the first week home an even greater challenge. Now, however, we finally have him on a medication that has just about cleared it up, so he is much less fussy.
Right now, he is eating every 2-3 hours, and he eats a lot. Most times, he breastfeeds, then drinks a two ounce bottle, then 2 hours later is ready to eat again. Now that he is feeling better, he is sleeping a lot, and growing big and strong. We have to check his blood pressure frequently to make sure that it does not bottom out, and he for now he is on three different medications. The nephrologist saw him this week and said his blood pressure is looking good, but it is still not quite low enough to try weaning him off the medications. We will check back again in two weeks and see how he's doing. And of course, we are trying to get as much sleep as possible, so my husband and I take turns during the night, and so far it's working well. We have also been watching his growth and weight carefully, and in the last week, he gained half a pound. He is now up to 9 pounds, 8 ounces. His pediatrician was so excited and said he is doing great!
We also met with Early Childhood Intervention today, and they were incredibly impressed with how he is doing. They completed an evaluation to determine if he qualifies for services (physical or occupational therapy, nutritionist, etc.). They looked at all sorts of different things, such as how he is eating as well as his fine and gross motor skills, and determined him to be at a 2-3 month old level cognitively and developmentally (he is 3 months old). They were so amazed at how he is eating, how big he is, and what he is doing these days, and based on the evaluation, he was not even far enough behind to qualify for ECI services! Because he was 12 weeks premature and had a host of medical conditions, however, they are allowing him to receive services, so we are very thankful for that! I will take all the extra help I can get for him. And, it will not cost us anything, for which we are incredibly grateful!!
To see him and interact with him, you would never ever know all the difficulties he has faced, or that he was born at only 28 weeks. It is such a joy to be all together as a family and feel like our life can finally get back to normal. Well, for now, it's a new normal. But that's ok. We are trying to cherish each and every moment, because we have three months of lost time with our son to catch up on!
Here are some pictures from Valentine's Day-the last day that my babies were apart.
Wednesday, February 17, 2010
Our son had a sudden and unique start in life, and he faced (and overcame) innumerable challenges in his first three months on this earth. These posts tell his story in the Neonatal Intensive Care Unit, and share our family's struggles, hopes, fears and praises along the way. Thank you for reading!
These posts are in reverse chronological order, starting with his birth and continuing until he came home from the hospital. To read them from the beginning, scroll down to the bottom of the page and click on "older posts" until you get to the first one, and then read from oldest to newest.
Tuesday, February 16, 2010
Home Sweet HOME
We're Home. All of us. Together. Since my son's blood pressure was stable, and we weren't having any problems, the doctors decided we did not need to stay another night, so we were actually discharged yesterday, February 15. It was a long day, because there was SO much that had to be done before he could go home, but we got it done, and now we're home. Home, sweet home.
We said goodbye to this:
And this:
And packed up our little guy to go home.
We said goodbye to this:
And this:
And especially this:
And packed up our little guy to go home.
I still can't believe that after 97 long days, it's finally over and he's HOME! Thank you so very much for all your prayers and encouragement. God is so good!
Sunday, February 14, 2010
Rooming In
After a baby has spent the first days (or weeks or months...) of life in the NICU, it is a huge adjustment to suddenly bring the baby home. To ease this transition a bit, and make sure parents are 100% confident and ready to take care of their baby on their own, without monitors and nurses and doctors, the hospital requires parents to spend the first night or two with the baby at the hospital.
So tonight, I have begun this rooming in process. They wheeled my son's crib into a small, private room, unattached to any monitor, cord, or tube. I am now fully responsible for keeping up with his schedule, feeding him, changing him, checking his blood pressure and learning how and when to give his many medications. The good thing about still being in the hospital, however, is that if I have any questions, problems or concerns, his nurse is just down the hall, a simple phone call away. It is incredibly reassuring to know they are here to help me as I get adjusted to taking care of him on my own.
I can't even express how amazingly wonderful and exciting it is to finally hold my child without being attached to anything. I can cuddle with him, or walk around the room with him, and I don't have to constantly worry about leads coming detached or tubes being pulled out. I am loving every second of my time alone with him, and feeling really ready to bring him home. I just know his sister is going to adore him, and I can't wait to see them together, under the same roof!
So tonight, I have begun this rooming in process. They wheeled my son's crib into a small, private room, unattached to any monitor, cord, or tube. I am now fully responsible for keeping up with his schedule, feeding him, changing him, checking his blood pressure and learning how and when to give his many medications. The good thing about still being in the hospital, however, is that if I have any questions, problems or concerns, his nurse is just down the hall, a simple phone call away. It is incredibly reassuring to know they are here to help me as I get adjusted to taking care of him on my own.
I can't even express how amazingly wonderful and exciting it is to finally hold my child without being attached to anything. I can cuddle with him, or walk around the room with him, and I don't have to constantly worry about leads coming detached or tubes being pulled out. I am loving every second of my time alone with him, and feeling really ready to bring him home. I just know his sister is going to adore him, and I can't wait to see them together, under the same roof!
Saturday, February 13, 2010
Let the Countdown Begin!
It's finally here! My son is finally, FINALLY able to come home!!!
Tomorrow I will begin to room in at the hospital, and will be rooming in for two nights, so he should be discharged on Tuesday, February 16.
I'll explain more about what rooming in is soon, as well as all the details about his coming home, but right now, I have to go make sure I have everything ready for him to come home!!!
So only three more days until he is HOME with his family!!!!!!!
Tomorrow I will begin to room in at the hospital, and will be rooming in for two nights, so he should be discharged on Tuesday, February 16.
I'll explain more about what rooming in is soon, as well as all the details about his coming home, but right now, I have to go make sure I have everything ready for him to come home!!!
So only three more days until he is HOME with his family!!!!!!!
Thursday, February 11, 2010
Three Months
At 1:21 this morning, my son turned exactly three months old. Today he is spending his 93rd day in the hospital. I don't think I have to tell you that this has been an incredibly long three months, or that I am so beyond ready for him to come home. But in spite of everything, I continue to be amazed at what God is capable of. The strength that He provides, and the amazing miracle that is my son.
And even though he is still in the hospital, I am so thankful that he is doing so incredibly well. There are a million things that could have been worse, and I always try to keep things in perspective. And although he is not quite where a full-term three month old would be developmentally, he is big and strong, and will catch up in no time.
Thank you so much for your prayers. We are praying everyday that his blood pressure will go down so that he can come home!
And even though he is still in the hospital, I am so thankful that he is doing so incredibly well. There are a million things that could have been worse, and I always try to keep things in perspective. And although he is not quite where a full-term three month old would be developmentally, he is big and strong, and will catch up in no time.
Thank you so much for your prayers. We are praying everyday that his blood pressure will go down so that he can come home!
Wednesday, February 10, 2010
So Close
Overall, things are going great. My little guy is eating really well and gaining weight, and is now up to 8 pounds, 15 ounces. He is a happy baby, and is no longer struggling to breathe, or dealing with a stressed out heart. They've even taken off his pulse oximeter which was monitoring his oxygen saturation, because he no longer needs it. After months of watching him struggle and watching those numbers dip, and being on and off different breathing machines, I never thought the day would come when we didn't even need to monitor his oxygen anymore.
If only we could get (and keep) his blood pressure down.
A nephrologist (kidney doctor) has been monitoring him and trying to figure out the right dosages of medication. He is now on one medication 3 times a day, another twice a day, and then a third if his numbers are still too high. Because we have not been able to get it down and keep it down, he decided today to start him on a diuretic to make sure he gets rid of all excess fluid. If he is retaining any fluids, they could be adding to the high blood pressure. I am hopeful that this, along with the meds, will do the trick. As soon as his blood pressure is down to normal levels for a baby his size (right now he has the blood pressure of a healthy adult), he can go home.
Knowing we are this close is making it even harder to be patient. But it is important that the doctors do not start him on more medication than he needs, so they have had to start very low and gradually increase. At some point, though, he will be on enough medication to keep it under control.
We are not there yet, but we are so close.
If only we could get (and keep) his blood pressure down.
A nephrologist (kidney doctor) has been monitoring him and trying to figure out the right dosages of medication. He is now on one medication 3 times a day, another twice a day, and then a third if his numbers are still too high. Because we have not been able to get it down and keep it down, he decided today to start him on a diuretic to make sure he gets rid of all excess fluid. If he is retaining any fluids, they could be adding to the high blood pressure. I am hopeful that this, along with the meds, will do the trick. As soon as his blood pressure is down to normal levels for a baby his size (right now he has the blood pressure of a healthy adult), he can go home.
Knowing we are this close is making it even harder to be patient. But it is important that the doctors do not start him on more medication than he needs, so they have had to start very low and gradually increase. At some point, though, he will be on enough medication to keep it under control.
We are not there yet, but we are so close.
Saturday, February 6, 2010
A Light...
...at the end of the tunnel.
Well, friends, I hesitate to even say this, because things could change in an instant, but I believe we can finally see a light at the end of this long long tunnel.
For the past few days, my son has been drinking six bottles out of his eight feedings, and almost every time he gulps the whole thing down. I have a feeling in the next day or two they will let him drink a bottle at every feeding and see how he does. They need to make sure he can drink the whole thing (over two ounces) each time, and all the while still gain weight. They don't want him expending so much energy eating that he is burning more calories than he is taking in.
In addition to that, they are still trying to get his blood pressure under control. We were optimistic at first, because the new medication he was on seemed to be working, but since then, it has continued to be high. They have slowly increased the dosage, and we are hoping they will soon find the magic number to keep it steady and where it needs to be.
And then?
THEN, he gets to come home.
THEN, he gets to meet his sister for the first time.
THEN, life can get back to some semblance of "normal."
THEN, we can begin to figure out life with two small children, 11 months apart.
It's going to be amazing. I don't think I will ever again complain of a fussy baby. Or a baby who doesn't sleep through the night. Or a baby who dirty's a diaper 30 seconds after I put it on. No, because at least they will be home, with me, where they belong.
And I absolutely can't wait.
Well, friends, I hesitate to even say this, because things could change in an instant, but I believe we can finally see a light at the end of this long long tunnel.
For the past few days, my son has been drinking six bottles out of his eight feedings, and almost every time he gulps the whole thing down. I have a feeling in the next day or two they will let him drink a bottle at every feeding and see how he does. They need to make sure he can drink the whole thing (over two ounces) each time, and all the while still gain weight. They don't want him expending so much energy eating that he is burning more calories than he is taking in.
In addition to that, they are still trying to get his blood pressure under control. We were optimistic at first, because the new medication he was on seemed to be working, but since then, it has continued to be high. They have slowly increased the dosage, and we are hoping they will soon find the magic number to keep it steady and where it needs to be.
And then?
THEN, he gets to come home.
THEN, he gets to meet his sister for the first time.
THEN, life can get back to some semblance of "normal."
THEN, we can begin to figure out life with two small children, 11 months apart.
It's going to be amazing. I don't think I will ever again complain of a fussy baby. Or a baby who doesn't sleep through the night. Or a baby who dirty's a diaper 30 seconds after I put it on. No, because at least they will be home, with me, where they belong.
And I absolutely can't wait.
Friday, February 5, 2010
Thursday, February 4, 2010
Good News
Over the past two days, we have had some very good news!
1. My son's renal ultrasound was all clear and everything was normal-kidneys, bladder, etc. So there are no abnormalities, or blockage or kidney stones.
2. Although it is still unclear what is causing the high blood pressure, he is now on a new medication which, so far, is keeping it down and consistent.
3. Yesterday, every time my son took a bottle (three times) he drank the ENTIRE thing. This is the first time he has done this in a 24 hour period.
4. Tomorrow, the doctor is going to let him try (finally!) to drink a bottle four times and see how he does. Hopefully he will show them he really likes to eat!
Unfortunately, I still haven't gotten the video of my daughter walking loaded on my computer yet. But I promise to try sometime soon! What I do have, is a picture of my sweet, sweet boy in a swing at the hospital.
1. My son's renal ultrasound was all clear and everything was normal-kidneys, bladder, etc. So there are no abnormalities, or blockage or kidney stones.
2. Although it is still unclear what is causing the high blood pressure, he is now on a new medication which, so far, is keeping it down and consistent.
3. Yesterday, every time my son took a bottle (three times) he drank the ENTIRE thing. This is the first time he has done this in a 24 hour period.
4. Tomorrow, the doctor is going to let him try (finally!) to drink a bottle four times and see how he does. Hopefully he will show them he really likes to eat!
Unfortunately, I still haven't gotten the video of my daughter walking loaded on my computer yet. But I promise to try sometime soon! What I do have, is a picture of my sweet, sweet boy in a swing at the hospital.
Tuesday, February 2, 2010
This and That
I know I am thoroughly delayed in updating you all as to my son's progress, and for that, I am very sorry. We had quite a busy weekend, and I have a sinus infection to boot. Anyway, onto the update...
He is doing well. Although his surgery has made breathing infinitely easier on him (and his heart), recovery from surgery was a little tougher on him and took a little longer than we anticipated (seems to be a theme around here these days). It took a bit longer to get him extubated than they originally thought, longer to get off morphine, and longer to get used to being off morphine (he had to be on another drug-Ativan-to help calm him from agitation from no longer getting the narcotic). But he seems to be doing much better as far as all of that is concerned. He's happily breathing room air with no issues at all, and only gets Tylenol if he seems to be in pain.
Now, however, it seems we have a new hurdle. He has been struggling since his surgery with high blood pressure. At first, we assumed it was because he was in so much pain, as well as a result of his body adjusting to a now closed ductus, and all the blood flowing the way it is supposed to. He has been treated with blood pressure medication, however, and it does not seem to be doing the trick. It will bring it down for maybe a few hours, but ultimately he needs medication again later in the day.
Today, the doctors did an ultrasound on his kidneys to see if there was anything going on to cause the high blood pressure. Apparently, high blood pressure can be related to problems with the kidneys (a problem with blood flow or some sort of blockage), so the doctors are checking those first. Also, a blood pressure specialist (I'm not sure what their official title is) is going to be checking on him today. So hopefully in the next day or so we will have some answers, and can resolve this issue for him.
He is still only getting a bottle three times a day, and so far hasn't been too consistent with his eating. Sometimes he gulps down the whole thing, other times he will only drink half or so. But I have been able to start working on breastfeeding again now that he is recuperated, and today he did fantastic! So I'm feeling very confident that he will be able to do it when he gets home.
In other, totally unrelated news, MY DAUGHTER STARTED WALKING LAST NIGHT! She has finally overcome her fear of letting go, and walked about three feet back and forth between me and my husband. I got a little of it on video, which I will be trying (very hard!) to figure out how to post it later tonight (wish me luck!). My husband, unfortunately, only managed to tape the kitchen counter. So it's not very much that we actually have on camera, but maybe we can get some more footage tonight. =D
Whew. Well, I think that's all I got! Thank you for your concern and prayers for our little boy and family!!
He is doing well. Although his surgery has made breathing infinitely easier on him (and his heart), recovery from surgery was a little tougher on him and took a little longer than we anticipated (seems to be a theme around here these days). It took a bit longer to get him extubated than they originally thought, longer to get off morphine, and longer to get used to being off morphine (he had to be on another drug-Ativan-to help calm him from agitation from no longer getting the narcotic). But he seems to be doing much better as far as all of that is concerned. He's happily breathing room air with no issues at all, and only gets Tylenol if he seems to be in pain.
Now, however, it seems we have a new hurdle. He has been struggling since his surgery with high blood pressure. At first, we assumed it was because he was in so much pain, as well as a result of his body adjusting to a now closed ductus, and all the blood flowing the way it is supposed to. He has been treated with blood pressure medication, however, and it does not seem to be doing the trick. It will bring it down for maybe a few hours, but ultimately he needs medication again later in the day.
Today, the doctors did an ultrasound on his kidneys to see if there was anything going on to cause the high blood pressure. Apparently, high blood pressure can be related to problems with the kidneys (a problem with blood flow or some sort of blockage), so the doctors are checking those first. Also, a blood pressure specialist (I'm not sure what their official title is) is going to be checking on him today. So hopefully in the next day or so we will have some answers, and can resolve this issue for him.
He is still only getting a bottle three times a day, and so far hasn't been too consistent with his eating. Sometimes he gulps down the whole thing, other times he will only drink half or so. But I have been able to start working on breastfeeding again now that he is recuperated, and today he did fantastic! So I'm feeling very confident that he will be able to do it when he gets home.
In other, totally unrelated news, MY DAUGHTER STARTED WALKING LAST NIGHT! She has finally overcome her fear of letting go, and walked about three feet back and forth between me and my husband. I got a little of it on video, which I will be trying (very hard!) to figure out how to post it later tonight (wish me luck!). My husband, unfortunately, only managed to tape the kitchen counter. So it's not very much that we actually have on camera, but maybe we can get some more footage tonight. =D
Whew. Well, I think that's all I got! Thank you for your concern and prayers for our little boy and family!!
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