It seems like frustration is never-ending around here. This past week, Holden's BUN has been creeping up, we think due to dehydration. In response to that, the doctors decided to cut his diuretics. I was against it, and was very vocal about my opinion, but the doctors went ahead anyway. My concern was that cutting his diuretics when he's already on oxygen would only increase the fluid in his lungs and cause more respiratory issues. We noticed last night that his face is puffier than usual, his breathing was labored and rapid for most of the night, and his xray showed a white-out again. All of this means that he's retaining fluid and putting more strain on his lungs and heart. The doctors decided this morning to go back up on his diuretics, and possibly even add IV diuretics to get back ahead of the edema. This is all really frustrating to me, because I feel like they should have listened when we told them this is what would happen. I know that they're the ones with medical degrees, but we know our child, and we've been down this road more times than I like to recall. We know exactly what happens when we decrease his diuretics, and unfortunately we were proven right again. It's hard to triumph in being right or to even do the "I told you so" dance when Holden is the one suffering the consequences. :(
His vomiting still isn't under control, but it's really episodic now. He'll go for hours without throwing up, and then have a few hours where he throws up over and over again. We had hoped that this new combination of meds would be the magic combo, but it doesn't appear that they have helped much. I suppose we should be thankful that he's not throwing up around the clock now, instead of focusing on what's still wrong. Something to think about...
Something else to think about (I'm a master at the segue :)... Until the testing and screening I talked about in my last post becomes mandatory, you should know what to look for in your baby or child to indicate a problem with their heart. Some babies, like Holden, are almost completely asymptomatic, so it's vital to see a pediatric cardiologist if you or your pediatrician notice anything wrong at all. The most common symptom is slow/difficult eating, so pay attention to your instincts if you feel like something is not quite right. Other signs and symptoms may include sweating while eating- due to the exhaustive effort, excessive sleeping from constant fatigue, labored or rapid breathing due to build-up of fluid in the lungs, and cyanosis- a bluish tint to the skin, lips, nails and extremities. Your child may have all or just a few of these symptoms. And remember, most heart defects don't cause chest pain or any other painful symptoms.
I hope nobody I know and love ever needs this information, but please keep it in the back of your mind. If it helps even one child, I've done my part. :)
Wednesday, February 9, 2011
Tuesday, February 8, 2011
Day 100
Ouch... That was a hard title to type. I don't know why, but the 100th day seemed like such a scary milestone to me- One that I never wanted to meet. However, I am beyond thankful for every day I have with him, whatever the setting. If it takes 100 more days in here, we'll gladly serve them to be able to bring our baby home. He is truly a miracle, and far braver than me. So many mothers would give anything to be with their babies for one more day, even in a hospital. When I look at it that way, it seems selfish of me to complain about being here.
Many CHD families learn about their child's heart defect during pregnancy. However, there are countless others who don't find out until after their child's birth and for some it is too late. I didn't know about heart defects before Holden was born, and I didn't know any of the signs to watch for either. We took him home thinking he was a perfectly healthy baby. If his heart weren't so perfectly imperfect, we could have lost him before we even knew what was wrong with him. We were lucky. Some families aren't as fortunate. It breaks my heart every time I read a story of an undiagnosed baby passing away. News like this makes me so angry and rips my heart to pieces because it shouldn't be this way. More should be done to prevent this from happening. No mother should have to leave the hospital with empty arms, or be forced to say goodbye to her baby after only a few short hours or days. Many OB/GYN's are still not performing routine 20 week ultrasounds (mine included) and many hospitals are not performing pulse oximetry testing (O2 reading) before sending babies home. If more parents found out about potential CHD's at the 20 week ultrasound, surgeons and medical staff could be prepared at the time of the birth. Countless lives could be saved. (And it's one more chance to see your sweet baby on the monitor... Why pass that up??) The pulse oximetry test could catch defects that are missed by that ultrasound. These are both non-invasive tests that only take a few minutes. INSIST on having both tests, even if they're not required. (And they probably won't be.) It could save your baby's life!
Many CHD families learn about their child's heart defect during pregnancy. However, there are countless others who don't find out until after their child's birth and for some it is too late. I didn't know about heart defects before Holden was born, and I didn't know any of the signs to watch for either. We took him home thinking he was a perfectly healthy baby. If his heart weren't so perfectly imperfect, we could have lost him before we even knew what was wrong with him. We were lucky. Some families aren't as fortunate. It breaks my heart every time I read a story of an undiagnosed baby passing away. News like this makes me so angry and rips my heart to pieces because it shouldn't be this way. More should be done to prevent this from happening. No mother should have to leave the hospital with empty arms, or be forced to say goodbye to her baby after only a few short hours or days. Many OB/GYN's are still not performing routine 20 week ultrasounds (mine included) and many hospitals are not performing pulse oximetry testing (O2 reading) before sending babies home. If more parents found out about potential CHD's at the 20 week ultrasound, surgeons and medical staff could be prepared at the time of the birth. Countless lives could be saved. (And it's one more chance to see your sweet baby on the monitor... Why pass that up??) The pulse oximetry test could catch defects that are missed by that ultrasound. These are both non-invasive tests that only take a few minutes. INSIST on having both tests, even if they're not required. (And they probably won't be.) It could save your baby's life!
Monday, February 7, 2011
Day 99
Things are looking pretty much the same around here. Holden's throwing up a little bit less, which is great, but he's still showing signs of being severely dehydrated. We're trying unsuccessfully to push the Gatorade, but he's not loving it. Maybe that will resolve itself if he can keep fluids down for a little while. We've had a couple of days before where the vomiting let up briefly, only to return, but I'm hoping and praying that this reprieve will last!!
In other news, today marks the first day of CHD Awareness week - February 7th-14th. This week is an effort to educate the public about Congenital Heart Defects.
40,000 babies are born with heart defects in the United States every year. Each day, out of the 10,830 babies born in the U.S., 87 will be born with a congenital heart defect. Isn't it time to find out why?
Awareness is desperately needed to fund research into the nation's #1 birth defect. A fraction of a penny out of every dollar put towards CHD research isn't good enough. More can be done.
If you're looking for more information, all three of these are reliable places to look:
http://www.childrensheartfoundation.org/about-chf/fact-sheets
http://www.americanheart.org/presenter.jhtml?identifier=12012
http://tchin.org/
Saturday, February 5, 2011
Day 97
As I typed the title to this post- Day 97- I cringed a little. We're about to hit the triple digits in days, and that's enough to depress me on this Saturday night. We seem to be in somewhat of a holding pattern, repeating the same things day after day. Of course, Holden is still throwing up, and he's still on oxygen. (I really hate typing that line over and over again... I'm ready for a new one!) The only good news in all of this is that he is managing to gain tiny bits of weight... He's on an elemental formula now, so he's absorbing the nutrients more quickly even when he throws up his feeds.
We've had to decrease his diuretics because he's dehydrated and his kidney numbers are starting to look bad again. His lungs are still wet, so decreasing his diuretics won't help that situation out at all, but we don't really have a choice. We'll just have to circle back around to his respiratory issues once we get a handle on the digestive problems. (If we ever get a handle on them.)
The GI team came back in to consult today, and they're just as stumped as the rest of the doctors. Apparently we've already tried everything they would recommend, and they don't have much left in their bag of magic tricks. Any other tests/procedures they could do would be invasive, and the cardiac doctors have vetoed anything involving anesthesia unless absolutely necessary. We may soon get to that point, but for now the risks aren't worth it. So we've added a new med, an antihistamine, that may help. I won't even pretend to understand how an antihistamine works on intestinal motility and vomiting, so I'll leave that part to the doctors. I continue to pray that they'll find something, anything, that will work for him, but I can't get my hopes up too high anymore. I hope someday we'll be able to look back on this and not even remember how hard it was, but we're not there yet.
His withdrawl seems to be better under control now, since we've stopped weaning and changed his methadone and Valium to IV. The pain management team thinks that in addition to us weaning the doses, he was also self-weaning by throwing up his meds, and that creates a scary cycle. He seems to be doing much better on the withdrawl front now.
I'm sorry to have kept everyone waiting on an update, but we've been having issues with the laptop. You can thank my cousins Jack and Jennifer for this one, because they brought me their laptop to use while they fix mine. They also brought bags of goodies for us and stayed to visit for a while... Jack attempted to take apart my laptop in the hospital room, but the job was a little more complicated than he anticipated. I would be going through internet withdrawls by now without their help. :) We are reminded daily how incredibly blessed we are by our amazing family and friends!
I'm sure everyone has big plans for the Super Bowl tomorrow, and I hope everyone stays safe in the nasty weather. Holden doesn't care who wins, but he'll be forced to watch the game anyway. You have to start them young. :)
We've had to decrease his diuretics because he's dehydrated and his kidney numbers are starting to look bad again. His lungs are still wet, so decreasing his diuretics won't help that situation out at all, but we don't really have a choice. We'll just have to circle back around to his respiratory issues once we get a handle on the digestive problems. (If we ever get a handle on them.)
The GI team came back in to consult today, and they're just as stumped as the rest of the doctors. Apparently we've already tried everything they would recommend, and they don't have much left in their bag of magic tricks. Any other tests/procedures they could do would be invasive, and the cardiac doctors have vetoed anything involving anesthesia unless absolutely necessary. We may soon get to that point, but for now the risks aren't worth it. So we've added a new med, an antihistamine, that may help. I won't even pretend to understand how an antihistamine works on intestinal motility and vomiting, so I'll leave that part to the doctors. I continue to pray that they'll find something, anything, that will work for him, but I can't get my hopes up too high anymore. I hope someday we'll be able to look back on this and not even remember how hard it was, but we're not there yet.
His withdrawl seems to be better under control now, since we've stopped weaning and changed his methadone and Valium to IV. The pain management team thinks that in addition to us weaning the doses, he was also self-weaning by throwing up his meds, and that creates a scary cycle. He seems to be doing much better on the withdrawl front now.
I'm sorry to have kept everyone waiting on an update, but we've been having issues with the laptop. You can thank my cousins Jack and Jennifer for this one, because they brought me their laptop to use while they fix mine. They also brought bags of goodies for us and stayed to visit for a while... Jack attempted to take apart my laptop in the hospital room, but the job was a little more complicated than he anticipated. I would be going through internet withdrawls by now without their help. :) We are reminded daily how incredibly blessed we are by our amazing family and friends!
I'm sure everyone has big plans for the Super Bowl tomorrow, and I hope everyone stays safe in the nasty weather. Holden doesn't care who wins, but he'll be forced to watch the game anyway. You have to start them young. :)
Thursday, February 3, 2011
Day 95- Birthday Recap
Holden is so very loved around here. Doctors, nurses and surgeons came by all morning to wish him a happy birthday, and he even got handmade birthday cards from Dr. Ikemba's sweet little girls. Two of his nurses brought him gifts and a birthday banner, and all of that was before the family got here with presents and cake. He may not realize it yet, but I don't think a little boy could ever exist who is more loved than mine. :)
He wasn't feeling his best yesterday, but we still tried our hardest to make it a fun day for him. We're pretty sure he's going through withdrawl again, as we've been weaning his methadone and Valium pretty steadily the past week. The withdrawl makes him shaky, sweaty, yawny, pukey and just plain crappy feeling. Poor kid... Even after a rescue dose of Loritab, he woke up fussy and feeling pretty bad. :( We still had his little party though, and there were a few fun moments in the day.
I wish I had gotten pictures of everybody who was here, but I wasn't that good. Here's what I did get...
He wasn't feeling his best yesterday, but we still tried our hardest to make it a fun day for him. We're pretty sure he's going through withdrawl again, as we've been weaning his methadone and Valium pretty steadily the past week. The withdrawl makes him shaky, sweaty, yawny, pukey and just plain crappy feeling. Poor kid... Even after a rescue dose of Loritab, he woke up fussy and feeling pretty bad. :( We still had his little party though, and there were a few fun moments in the day.
I wish I had gotten pictures of everybody who was here, but I wasn't that good. Here's what I did get...
Hanging out with Bobby before the party starts.
Not sure if we like the hat...
...Very sure that we don't like the hat.
Not too sure about the rest of our hats either.
His sweet nurses, Dee Dee and Whitney, brought in the banner and presents.
He loves the fire truck! (It makes noise, along with everything else he owns.)
He's figured out this opening presents business.
The hat isn't so bad when it comes with presents.
Bobby and Laci
Party on, Wayne...
The Horton cake my mother-in-law made for him out of cupcakes... Isn't it adorable?? It took her half a day to make, and it was perfect!
He wasn't sure about this part either.
He was quite sure he didn't like us singing to him. We didn't get past the first line. :)
He poked at it a little bit, but never ate any of it. :( We still have a few left over, and I haven't given up!
I really wish he had been looking at the camera... I never get to be in the pictures!
The second attempt, after his evening nap.
He didn't scream in terror, but he still wasn't impressed. Oh well!
He finally found a hat he didn't mind.
Wednesday, February 2, 2011
Day 94- Happy Birthday Holden!
Happy birthday, my little Braveheart... I truly cannot believe a year has passed since we first started out on this journey with you. So many times, I have wished to trade places with you... But I'm not sure I could have handled all of this as gracefully as you have.
You have shown unimaginable strength- far beyond your years. Your first year of life has been filled with obstacles and challenges, and you've risen up to meet them all. You are brave. You are tough. You are a miracle.
You have such an exceptional spirit. You have a unique power to inspire faith in the doubtful, put our priorities in order, and teach about hope- and what it means to fight for what matters most. I'm certain that your exceptional little spirit will be exceptionally spoiled for the rest of your life. How could I possibly deny you anything after seeing you go through this?
Your next year will be one filled with hope. Hope for the strength to get through the unknown. Hope that the perfect heart will be graciously given to you at the perfect time. Hope that tomorrow will come, and the next day, and the day after that. Hope that you will exceed everyone's expectations of you and remind us every day that prayers are answered. Our every hope for you may not be realized, but each day that you wake up and smile at the world is a miracle. And in that there is hope.
I watch you as you wrap everyone you meet around your little finger. You charm the Crocs right off of those nurses, and you have a fan club of doctors who come around just to see you smile. If I had to pick one quality you possess that I adore above all others, it is your ability to keep smiling, despite it all. You smile, you love, you trust, you fight- stealing hearts everywhere you go. Well done, little man. I am so proud to be your mommy, and I am eternally grateful that I get to call you mine.
You have shown unimaginable strength- far beyond your years. Your first year of life has been filled with obstacles and challenges, and you've risen up to meet them all. You are brave. You are tough. You are a miracle.
You have such an exceptional spirit. You have a unique power to inspire faith in the doubtful, put our priorities in order, and teach about hope- and what it means to fight for what matters most. I'm certain that your exceptional little spirit will be exceptionally spoiled for the rest of your life. How could I possibly deny you anything after seeing you go through this?
Your next year will be one filled with hope. Hope for the strength to get through the unknown. Hope that the perfect heart will be graciously given to you at the perfect time. Hope that tomorrow will come, and the next day, and the day after that. Hope that you will exceed everyone's expectations of you and remind us every day that prayers are answered. Our every hope for you may not be realized, but each day that you wake up and smile at the world is a miracle. And in that there is hope.
I watch you as you wrap everyone you meet around your little finger. You charm the Crocs right off of those nurses, and you have a fan club of doctors who come around just to see you smile. If I had to pick one quality you possess that I adore above all others, it is your ability to keep smiling, despite it all. You smile, you love, you trust, you fight- stealing hearts everywhere you go. Well done, little man. I am so proud to be your mommy, and I am eternally grateful that I get to call you mine.
Tuesday, February 1, 2011
Day 93
We didn't make too many changes this morning, and everything is about the same. We're trying some different timing on his feeds today, and going up on one of his heart meds to see if that helps out his lungs at all. Otherwise, we're just enjoying his good times and trying to comfort him through the bad.
The snow and ice outside doesn't affect me much, as I'm stuck on the 8th floor of a hospital regardless, but I hope everyone else is staying safe and warm today!
The snow and ice outside doesn't affect me much, as I'm stuck on the 8th floor of a hospital regardless, but I hope everyone else is staying safe and warm today!
He loves being rocked these days.
I love the look in his eyes in these... You can tell he was in a great mood!
By the age of 1, most parents are trying to get their babies off of the bottle. We, however, are super excited about anything he'll take by mouth!
Enjoying his walker, for all of five minutes. His legs are still too weak to move him around like they used to, and he gets really frustrated. We'll just keep trying!
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