So, as most of you already know - LOGAN IS HOME!! They discharged him home from the hospital on Thursday evening. They sent him home on a monitor which keeps track of his breathing and heart rate. Where ever he goes, so does the monitor. It makes it a bit harder to get around with him, but it's nice peace of mind. It's SO nice to be able to see him, hold him, and talk to him whenever I want to. It's nice not to have to make the drive to and from the hospital multiple times a day. It's wonderful to see how he fits into our family, with us, the girls, and the dogs. Yesterday I was home alone with him and he slept on my chest as I watched a movie...the best feeling in the world!
That's the good news. The bad news is the repeat blood work came back abnormal again. This time there were multiple amino acids with elevated levels. Before they discharged him the did an ammonia test, which was normal (a GOOD sign), but he still needs follow up with a geneticist. I have an appointment at UIC tomorrow.
Right now, our biggest concern are his feedings. In the hospital he was eating like a CHAMP and was eating 4oz every 4 hours, like clockwork. Since he's been home he hasn't been eating so well. Right now he's eating 1/2 oz to 2 oz every 1.5 to 2 hours. And since it takes him between 1/2 hour and an hour to eat what little he does, we are pretty much TRYING to feed him ALL the time. Last night Bryan fed him at 11:30 and 1am, I was up with him at 2 and at 4, and Bryan was back up with him at 5:30 and 7:30. I am really hoping this is just a period of adjustment for him, and not a sign of a larger problem...because the larger problem would be Citrullinemia.
It's so frustrating not knowing if this is a normal part of the process or something larger. Hopefully we can find out more next week. He's getting more blood work done tomorrow and they said we should know about 48 hours later. Fingers crossed
Sunday, July 31, 2011
Sunday, July 24, 2011
The Fine Line between Opinion and Judgement
I didn't mean to worry people with my last blog about the genetic testing. I really am not worried about it, and I'm pretty confident (and so is the doctor) that everything will be fine. The purpose of this blog is 1/2 to inform people and 1/2 to allow me a venue to vent. I think that particular post was me "getting it out there" so I could relax about it.
In the meantime, Mr Logan is a superstar. His weight it up to 6lbs 13.5 oz. He's gaining so much, so fast that this morning the doctors took him off the preemie formula and put him on regular formula, which has fewer calories per oz. Good thing too, because he's already got 3 chins. He's only had 1 apnea spell in the last 4 days.
They will be starting another fax study tomorrow. The doctor is pretty confident that he will pass this time. I was told that even if he doesn't fully "pass" that as long as he doesn't fail it miserably he will be coming home on Thursday. How well he does will determine if he comes home with a monitor or without a monitor. Either way - just to have him here is exciting. We are ready for him, the nursery is ready for him, we have everything we need here - except a baby.
On a personal level, I'm a little down today. Whenever you do anything major in life - people are going to offer their opinions. This is a fact that anybody looking into schools, getting married, moving, or having a baby, know very well. There are always going to be people offering up their experiences and advice. I appreciate everybody's advice and experience. I have an issue when I feel like people are judging me for following my own path. I hate the phrase "what you should do is..." Ultimately, what I should do is what I feel is best for me and my family. I love people sharing their own experiences with me, but it really frustrates me when people think they know what is best for me. Especially since everybody has a different opinion.
As much as I love the NICU nurses, they are the worst for the "right" way to do things. I have been taught to burp him 4 different ways, 7 different ways to hold him while I feed him, and 3 different "best" ways to change his diaper. I will be feeding him the way the night nurse told me, and the day nurse will say "oh no, do it this way - it's better". I am so grateful to everything I have learned from them (and it's alot), but it can get frustrating sometimes.
In the meantime, Mr Logan is a superstar. His weight it up to 6lbs 13.5 oz. He's gaining so much, so fast that this morning the doctors took him off the preemie formula and put him on regular formula, which has fewer calories per oz. Good thing too, because he's already got 3 chins. He's only had 1 apnea spell in the last 4 days.
They will be starting another fax study tomorrow. The doctor is pretty confident that he will pass this time. I was told that even if he doesn't fully "pass" that as long as he doesn't fail it miserably he will be coming home on Thursday. How well he does will determine if he comes home with a monitor or without a monitor. Either way - just to have him here is exciting. We are ready for him, the nursery is ready for him, we have everything we need here - except a baby.
On a personal level, I'm a little down today. Whenever you do anything major in life - people are going to offer their opinions. This is a fact that anybody looking into schools, getting married, moving, or having a baby, know very well. There are always going to be people offering up their experiences and advice. I appreciate everybody's advice and experience. I have an issue when I feel like people are judging me for following my own path. I hate the phrase "what you should do is..." Ultimately, what I should do is what I feel is best for me and my family. I love people sharing their own experiences with me, but it really frustrates me when people think they know what is best for me. Especially since everybody has a different opinion.
As much as I love the NICU nurses, they are the worst for the "right" way to do things. I have been taught to burp him 4 different ways, 7 different ways to hold him while I feed him, and 3 different "best" ways to change his diaper. I will be feeding him the way the night nurse told me, and the day nurse will say "oh no, do it this way - it's better". I am so grateful to everything I have learned from them (and it's alot), but it can get frustrating sometimes.
Saturday, July 23, 2011
Abnormal Blood Test
I went to see Logan this morning, and the doc gave me some troubling news. Standard procedure is to run a blood test when a baby is first born, they then repeat the test when the baby is 25 hours old.
I was informed this morning that while the first test came back completely normal, the 2nd test came back with elevated levels of a specific amino acid.
This means that there is the potential that Logan could have a genetic disorder called Citrullinemia. Children with this disorder have an enzyme that is missing or not working properly. Without that enzyme ammonia builds up in the blood and can lead to serious complications if not treated. Complications can include muscle weakness, breathing problems, seizures, swelling of the brain, coma and sometimes death. To avoid this build up (and these complications) most common treatment is a low protein diet for the rest of his life - no dairy, eggs, nuts, meat, etc. At the times when it does build up hospital stay with IV treatment would be needed.
I want to be very clear. They ARE NOT telling me he has this. One of the levels on his blood work points to the possibility, but it could have been just a fluke. They are re-running the tests again, and I should know in about 2 weeks. If he does have it, our next step would be a geneticist.
I am taking things day by day, but I am optimistic it will be a false alarm. In looking through the information I have noticed that he is not acting like a baby with this disorder would typically act. First symptoms are poor appetite, extreme sleepiness, irritability, and poor growth. Logan is 0 for 4. In fact - he gained another 2.5 oz yesterday putting him at 6lbs 11.9 oz. The doctor also told me that because this is a genetic disorder and not caused by anything but DNA - that typically we would have seen somebody in our family with the same disorder. That's not always the case because we could just be carriers, but typically it's rare to have a baby with this and NO family history of it. Bryan and I do not have any family history of this (or even heard of it until now), so it's another reason for me to feel confident.
As much as I expect everything to be normal, as a mother I still want to KNOW that my baby is healthy. Please pray for the results to come back normal, and that my Logan is a perfect baby.
I was informed this morning that while the first test came back completely normal, the 2nd test came back with elevated levels of a specific amino acid.
This means that there is the potential that Logan could have a genetic disorder called Citrullinemia. Children with this disorder have an enzyme that is missing or not working properly. Without that enzyme ammonia builds up in the blood and can lead to serious complications if not treated. Complications can include muscle weakness, breathing problems, seizures, swelling of the brain, coma and sometimes death. To avoid this build up (and these complications) most common treatment is a low protein diet for the rest of his life - no dairy, eggs, nuts, meat, etc. At the times when it does build up hospital stay with IV treatment would be needed.
I want to be very clear. They ARE NOT telling me he has this. One of the levels on his blood work points to the possibility, but it could have been just a fluke. They are re-running the tests again, and I should know in about 2 weeks. If he does have it, our next step would be a geneticist.
I am taking things day by day, but I am optimistic it will be a false alarm. In looking through the information I have noticed that he is not acting like a baby with this disorder would typically act. First symptoms are poor appetite, extreme sleepiness, irritability, and poor growth. Logan is 0 for 4. In fact - he gained another 2.5 oz yesterday putting him at 6lbs 11.9 oz. The doctor also told me that because this is a genetic disorder and not caused by anything but DNA - that typically we would have seen somebody in our family with the same disorder. That's not always the case because we could just be carriers, but typically it's rare to have a baby with this and NO family history of it. Bryan and I do not have any family history of this (or even heard of it until now), so it's another reason for me to feel confident.
As much as I expect everything to be normal, as a mother I still want to KNOW that my baby is healthy. Please pray for the results to come back normal, and that my Logan is a perfect baby.
Friday, July 22, 2011
Update on Logan (and Mommy)
So as many of you already know, Logan failed his fax study last weekend. In retrospect it is probably for the best. I wouldn't have been able to take care of him at home anyway.
On Friday evening I started feeling some mile jaw pain. I thought it was stress related and didn't think much more about it. By Sunday the entire left side of my face was swollen up and I was running a fever. I went to the ER on Sunday and they did a CT scan and diagnosed me with a perimandibular abscess, cellulitis, and sinusitis. I got vicodin and antibiotics, and was told to see an oral surgeon. Tuesday I called around to different oral surgeons and was told that in order to get it covered by medical insurance I would need a referral from my doc. Went to the doc Wed morning, got the referral and called to make an appt. By this time the swelling was out of control and the pain was unbearable. I would rather go through natural childbirth AGAIN then have to deal with that pain. The oral surgeon told me on the phone I needed to see an ENT, so I got the referral for them and when I went in, they told me I would need to go back to the oral surgeon. When I got to the oral surgeons office I was informed they were out of network and was told to go to the Libertyville ER so they could call the on call oral surgeon. Went into the ER (again) and was told the oral surgeon wouldn't come in b/c it's supposed to be an outpatient procedure. I was given Dilaudid (morphene) for the pain. It took 3 doses before I felt any relief. They sent me home on oxycodone and told me to call an oral surgeon in the morning. On Thursday I was FINALLY able to get into an oral surgeon who would actually see me, and I ended up needing to have my back molar pulled, and the infection drained. The antibiotics should clear up the rest of it.
That's been my week. Notice there isn't much about Logan in there? That's because I've been in so much pain and just trying to take care of myself that I've barely had a chance to visit my baby. He's an independant little guy though, and he's been doing better this week than I have. Now that the tube is out he's eating like a teenager. Most of the babies in the nursery will do 45 mL in 45 min. Logan regularly does 100 mL in about 20 min. The nurses have started calling him their little "piglet". As a result of this feeding frenzy, he's also put on a good amount of weight. As of last night he tips the scales at 6 lbs 9oz. He's what they would expect him to be at 1 month old...but he's only 2.5 weeks.
The only thing keeping him in the hospital right now is the apnea spells. He's had 2 in the last 2 days, and they seem to be getting less frequent. As of my conversation with the neonatologist this morning the plan is to restart the test on Monday. If he has no spells between now and Sunday they may start it on Sunday. If he passes THIS test it means he could be home as early as Wed or Thurs. I asked the doctor if he thought he would pass. The doctor said "99% of babies pass the 2nd time around". I'm optimistic, but trying not to get my hopes TOO high.
I was disappointed when I found out he failed the first test, but in light of everything I had to deal with myself this week it seems to be a blessing in disguise. I was telling the nurses that if I HAD to go through all the drama and pain and surgery, it at least happened when I wasn't pregnant and didn't have a baby at home. There was a window of a couple weeks, and I'm grateful it fell into that window. Everything happens for a reason.
On Friday evening I started feeling some mile jaw pain. I thought it was stress related and didn't think much more about it. By Sunday the entire left side of my face was swollen up and I was running a fever. I went to the ER on Sunday and they did a CT scan and diagnosed me with a perimandibular abscess, cellulitis, and sinusitis. I got vicodin and antibiotics, and was told to see an oral surgeon. Tuesday I called around to different oral surgeons and was told that in order to get it covered by medical insurance I would need a referral from my doc. Went to the doc Wed morning, got the referral and called to make an appt. By this time the swelling was out of control and the pain was unbearable. I would rather go through natural childbirth AGAIN then have to deal with that pain. The oral surgeon told me on the phone I needed to see an ENT, so I got the referral for them and when I went in, they told me I would need to go back to the oral surgeon. When I got to the oral surgeons office I was informed they were out of network and was told to go to the Libertyville ER so they could call the on call oral surgeon. Went into the ER (again) and was told the oral surgeon wouldn't come in b/c it's supposed to be an outpatient procedure. I was given Dilaudid (morphene) for the pain. It took 3 doses before I felt any relief. They sent me home on oxycodone and told me to call an oral surgeon in the morning. On Thursday I was FINALLY able to get into an oral surgeon who would actually see me, and I ended up needing to have my back molar pulled, and the infection drained. The antibiotics should clear up the rest of it.
That's been my week. Notice there isn't much about Logan in there? That's because I've been in so much pain and just trying to take care of myself that I've barely had a chance to visit my baby. He's an independant little guy though, and he's been doing better this week than I have. Now that the tube is out he's eating like a teenager. Most of the babies in the nursery will do 45 mL in 45 min. Logan regularly does 100 mL in about 20 min. The nurses have started calling him their little "piglet". As a result of this feeding frenzy, he's also put on a good amount of weight. As of last night he tips the scales at 6 lbs 9oz. He's what they would expect him to be at 1 month old...but he's only 2.5 weeks.
The only thing keeping him in the hospital right now is the apnea spells. He's had 2 in the last 2 days, and they seem to be getting less frequent. As of my conversation with the neonatologist this morning the plan is to restart the test on Monday. If he has no spells between now and Sunday they may start it on Sunday. If he passes THIS test it means he could be home as early as Wed or Thurs. I asked the doctor if he thought he would pass. The doctor said "99% of babies pass the 2nd time around". I'm optimistic, but trying not to get my hopes TOO high.
I was disappointed when I found out he failed the first test, but in light of everything I had to deal with myself this week it seems to be a blessing in disguise. I was telling the nurses that if I HAD to go through all the drama and pain and surgery, it at least happened when I wasn't pregnant and didn't have a baby at home. There was a window of a couple weeks, and I'm grateful it fell into that window. Everything happens for a reason.
Thursday, July 14, 2011
The Corner has been Turned
So as promised I am updating everybody on the status of baby Logan.
He's doing GREAT! He's taken almost all of his bottles for the last 24 hours, and in fact he's eating so well that his feeding tube will probably be removed today!
He has also been "spell free" for the last 24 hours. Cross your fingers that he stays that way, because if he's still spell free by tomorrow and eating well without the feeding tube they will do the fax study on him. The fax study monitors everything for 72 hours. If he passes that they will let him go home! If everything goes well - they may even discharge him as early as MONDAY!
I don't want to get my hopes up too high, Bryan and I are both fully prepared for him to be in the hospital another week...but we would be overjoyed to bring him home sooner.
I can tell the difference in him the last couple days. He's been more alert during feedings, and in general. He eats his food with gusto and still wants more. When I burp him he burps as soon as I sit him up, before I can even start patting his back. When he was first born he would only cry when he was naked...now he doesn't cry when he's naked but does cry when he's hungry. Some people may think this is a bad thing - but babies need to be able to communicate what they need when they need it, so I look at it as progress.
He's been gaining weight like crazy - average 2oz a day. As of this morning he tipped the scales at 5lbs 13 oz. Since they removed him from the isolete he has been a champ at keeping his temperature regulated.
I'm so proud of my little guy, fingers crossed he only has a couple days left before he can come home.
He's doing GREAT! He's taken almost all of his bottles for the last 24 hours, and in fact he's eating so well that his feeding tube will probably be removed today!
He has also been "spell free" for the last 24 hours. Cross your fingers that he stays that way, because if he's still spell free by tomorrow and eating well without the feeding tube they will do the fax study on him. The fax study monitors everything for 72 hours. If he passes that they will let him go home! If everything goes well - they may even discharge him as early as MONDAY!
I don't want to get my hopes up too high, Bryan and I are both fully prepared for him to be in the hospital another week...but we would be overjoyed to bring him home sooner.
I can tell the difference in him the last couple days. He's been more alert during feedings, and in general. He eats his food with gusto and still wants more. When I burp him he burps as soon as I sit him up, before I can even start patting his back. When he was first born he would only cry when he was naked...now he doesn't cry when he's naked but does cry when he's hungry. Some people may think this is a bad thing - but babies need to be able to communicate what they need when they need it, so I look at it as progress.
He's been gaining weight like crazy - average 2oz a day. As of this morning he tipped the scales at 5lbs 13 oz. Since they removed him from the isolete he has been a champ at keeping his temperature regulated.
I'm so proud of my little guy, fingers crossed he only has a couple days left before he can come home.
Wednesday, July 13, 2011
The OTHER love of my life.
I can't imagine loving anybody more than Logan. Whether or not he's crying, pooping, or sleeping - to me - he is the most fascinating thing on earth and perfect in every way.
But this post I wanted to talk about the other man in my life. Bryan and I have been together for 4.5 years, and in that time life has thrown some serious curve balls our way. I was there, supporting him, when his father passed away. Two years later he was my rock when I was dealing with the death of my sister. We have always loved, comforted, and supported each other when one of us needed it.
This time it's different. This time we are BOTH dealing with a stressful situation. I can easily see how the stress of a preemie baby could drive a wedge between a couple. Imagine the most stressful "normal day" and multiply it by 10 and then give your partner the same stress - throw in a whole bunch of exhaustion and it can be a recipe for tension.
It's not like that with us. It's not surprising to me how wonderful he is with our son. I've seen him interact with his daughter and I know what kind of Dad he is. It's not surprising to me the look of love that he has on his face every time he sees Logan. What is surprising to me is how connected the two of us have been in the last week and a half.
We've always been close, he has been my best friend for 4 years and I can easily say he knows me better than anybody else (including myself sometimes). Since Logan was born we have gotten even closer. We aren't getting annoyed at each other for the little things, we are both more helpful and understanding of each others moods. We both understand and appreciate what the other person is going through. Together we celebrate the victories, and lean on each other during the setbacks.
Father, husband, best friend, confidant, ally, cheerleader, soul mate. None of these words even come close to describing what Bryan means to me. If I have to go through this, I consider myself blessed to have him here, going through it with me.
But this post I wanted to talk about the other man in my life. Bryan and I have been together for 4.5 years, and in that time life has thrown some serious curve balls our way. I was there, supporting him, when his father passed away. Two years later he was my rock when I was dealing with the death of my sister. We have always loved, comforted, and supported each other when one of us needed it.
This time it's different. This time we are BOTH dealing with a stressful situation. I can easily see how the stress of a preemie baby could drive a wedge between a couple. Imagine the most stressful "normal day" and multiply it by 10 and then give your partner the same stress - throw in a whole bunch of exhaustion and it can be a recipe for tension.
It's not like that with us. It's not surprising to me how wonderful he is with our son. I've seen him interact with his daughter and I know what kind of Dad he is. It's not surprising to me the look of love that he has on his face every time he sees Logan. What is surprising to me is how connected the two of us have been in the last week and a half.
We've always been close, he has been my best friend for 4 years and I can easily say he knows me better than anybody else (including myself sometimes). Since Logan was born we have gotten even closer. We aren't getting annoyed at each other for the little things, we are both more helpful and understanding of each others moods. We both understand and appreciate what the other person is going through. Together we celebrate the victories, and lean on each other during the setbacks.
Father, husband, best friend, confidant, ally, cheerleader, soul mate. None of these words even come close to describing what Bryan means to me. If I have to go through this, I consider myself blessed to have him here, going through it with me.
When is he coming home?
With the exception of "how is he doing?", the most common question I get asked is - "When is he coming home?".
I hate when people ask me that question. It just reminds me that I don't know the answer. There are 4 criteria that Logan needs to meet before he can come home. Here they are, along with how he's doing as of right now with each of them.
1. Must be gaining weight. They need to make sure that his body is accepting the food/nutrients he's being given and that he's thriving. His birth weight was 5lbs 10 oz. Like most newborns he lost weight in the 1st week, dropping down to about 5lbs 4 oz. The last 3 nights he had weight gain on the scale and his current weight is 5lbs 11 oz. So - check that one off the list.
2. Must be regulating his own body temperature. For the first week or so of his life he was kept in the isolet (a baby incubator) to help keep his body warm. That's something our bodies do automatically, but he was born before the automatic reflex developed - so outside help was needed. 3 days ago he transitioned from the isolet into a regular open bassinet. He's been doing VERY well maintaining his body temperature. So - check that one off the list.
3. Must take his entire bottle for at least 48 hours. Right now Logan does have a feeding tube. They need to make sure that he's getting adequate nutrition. He eats every 4 hours and his bottles are 65 mL each (about 2.2 oz). Whatever he doesn't finish they put through the tube. The last couple days he had been slacking in the eating department with feedings that would be 17, 25, or 30...not even 1/2. Last night he made us so proud and at his 8pm feeding took ALL 65, followed by feedings of 63, 40, and 55. So there is improvement and hopefully will be more in the next few days.
4. Must be "spell" free for 8 days. Honestly, this was the one that worried me the most. Logan, like many preemies, is having "spells" This is where is heart rate and his oxygen saturation drop for more than 15 seconds. At first he was having about 4 or 5 of these a day, and would not come out of them on his own (they had to stimulate him to get him breathing again). In the last few days he has been averaging 2 a day, which he comes out of all by himself. I was worried that this would keep him in the hospital longer than everything else...8 days is a lifetime! I was told yesterday, however, that they will probably end up doing a "fax study". This is a specialized 3 day test where they monitor EVERYTHING. The report of those 72 hours is then analyzed by the Dr and specialists to determine if the spells are anything to worry about, if he just needs more time in the NICU, or if they are not dangerous and he can be sent home. They said most of the time they come back as nothing and can then release the baby home. I was told they will probably do this for Logan, but not until the feeding tube comes out.
This is what needs to happen for my baby to come home where he belongs. He has his good days and his bad days - but I can definitely see that he's trending in the right direction. Hopefully he will be home soon...I just wish I knew when.
I hate when people ask me that question. It just reminds me that I don't know the answer. There are 4 criteria that Logan needs to meet before he can come home. Here they are, along with how he's doing as of right now with each of them.
1. Must be gaining weight. They need to make sure that his body is accepting the food/nutrients he's being given and that he's thriving. His birth weight was 5lbs 10 oz. Like most newborns he lost weight in the 1st week, dropping down to about 5lbs 4 oz. The last 3 nights he had weight gain on the scale and his current weight is 5lbs 11 oz. So - check that one off the list.
2. Must be regulating his own body temperature. For the first week or so of his life he was kept in the isolet (a baby incubator) to help keep his body warm. That's something our bodies do automatically, but he was born before the automatic reflex developed - so outside help was needed. 3 days ago he transitioned from the isolet into a regular open bassinet. He's been doing VERY well maintaining his body temperature. So - check that one off the list.
3. Must take his entire bottle for at least 48 hours. Right now Logan does have a feeding tube. They need to make sure that he's getting adequate nutrition. He eats every 4 hours and his bottles are 65 mL each (about 2.2 oz). Whatever he doesn't finish they put through the tube. The last couple days he had been slacking in the eating department with feedings that would be 17, 25, or 30...not even 1/2. Last night he made us so proud and at his 8pm feeding took ALL 65, followed by feedings of 63, 40, and 55. So there is improvement and hopefully will be more in the next few days.
4. Must be "spell" free for 8 days. Honestly, this was the one that worried me the most. Logan, like many preemies, is having "spells" This is where is heart rate and his oxygen saturation drop for more than 15 seconds. At first he was having about 4 or 5 of these a day, and would not come out of them on his own (they had to stimulate him to get him breathing again). In the last few days he has been averaging 2 a day, which he comes out of all by himself. I was worried that this would keep him in the hospital longer than everything else...8 days is a lifetime! I was told yesterday, however, that they will probably end up doing a "fax study". This is a specialized 3 day test where they monitor EVERYTHING. The report of those 72 hours is then analyzed by the Dr and specialists to determine if the spells are anything to worry about, if he just needs more time in the NICU, or if they are not dangerous and he can be sent home. They said most of the time they come back as nothing and can then release the baby home. I was told they will probably do this for Logan, but not until the feeding tube comes out.
This is what needs to happen for my baby to come home where he belongs. He has his good days and his bad days - but I can definitely see that he's trending in the right direction. Hopefully he will be home soon...I just wish I knew when.
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