After an amazing week of playing, growing and settling in Brody experienced rapid changes. He had a low grade fever at home and we were encouraged to use Tylenol and wait a bit to see if it would go away. By the morning he was 102.4 and very aggitated. On our way to the Pulminologist's office he dropped his sats and when I looked in the rear view mirror to see him it looked like he was going into seizure. We quickly rerouted to the ER where they worked on him for an hour and a half. He was sent back up to ICU where they know him very well. He has an infection and went into septic shock. He is so swollen he is inreconizable. He is having issues with perfusion so had an all over blue hue. We had a hard time getting a pulse in his right foot. He is in a very guarded state. We don't know what happened or how this happened but it was quick and mean. I have not left his bedside and have been living at the hospital. Please think of our precious baby Brody.
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Wednesday, June 22, 2011
Friday, June 17, 2011
Reunited
Brody doing tummy time at home!!
Sorry Cameron that I put you in those horrible pjs
Look! I have two!
Brodys Mohawk
My tattoo for my miracles!!!
My mom reading a sophisticated publication while waiting go get inked! Ha!
A guy named Schlak listening to death metal tattooing my mom. Hysterical
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Saturday, June 4, 2011
Branded for Life
So much has gone on since the last time I blogged. Brody has made a lot of progress but will still be coming home on extra respiratory support and hooked up to all of his equipment at all times. It's a TON of stuff to carry around to move him through the house or to take to doctor's appointments. He is scheduled to come home Tuesday and will be transported here by ambulance. Of course Cameron gets sick this week! It's hard for me when he doesn't feel well eventhough it's probably just regular baby stuff because I'm so used to him being my "healthy" kid ( a relative term with them). He usually balances out the equation. So hopefully he will feel well enough to bring Brody home into a germ-free house on Tuesday.
Staffing our nursing makes me want to rip my hair out. The thought of having people I don't know with me 24 hours a day in and out makes me want to rip my hair out. I'm anxious about them being here and having no provacy but more anxious about not having them here when my insurance knocks us down to 16 hours a day in 2 weeks. I'm sure we will be settled at that point and I will be begging for them to give us some space but it's still scary. Brody started eating by bottle again so we alternate bottle and g-tube feedings. He is so much happier since he gets his beloved bottle!
Its going to be so crazy to see Brody and Cameron together again, rediscovering eachother : ) I hope Cameron keeps his fingers out of Brody's trach! Oh how the concerns of a mother of sick preemies differs from that of most others...
Brody is 10lbs 12 oz and gaining. Hoping to see 11 lbs before he gets discharged. I'm sure Cam hasn't gained any weight being sick this week as he has been puking most of his meals and I am limiting his intake.
Cam saw the eye doctor who confirmed that everything still looks good in there and maybe glasses/contact lenses in 6 months. His vision therapist (who is one of the most wonderful, inspiring women I have ever met) is very encouraged and pleased with his progress as are Brett and I.
In conclusion...the summer leg of Cameron's World Tour 2011 is on hiatus until his brother can join the band. If you thought we were hard to get a hold of before... I have a feeling things are about to get even crazier than we have expereinced yet. Please stay patient with us... there WILL be a day when we can get out more easily, safely and freely. We miss everyone and we are counting down the minutes until Brody is healthy enough to join all of the festivities outside of the hospital/house.
In all of my free time I'm squeezing in a trip to Deep Six tomorrow night for my first (and only) tattoo. I am the last person anyone would ever think would get one but I found something I love in s discreet spot that is for my babies... I tear up just thinking about what this tattoo means for me. To brand their fight on me... to maybe experience the smallest fraction of the pain that they have endured. This has changed us all for life so I see a permanent reminder that I can wear with pride fitting.
So much has gone on since the last time I blogged. Brody has made a lot of progress but will still be coming home on extra respiratory support and hooked up to all of his equipment at all times. It's a TON of stuff to carry around to move him through the house or to take to doctor's appointments. He is scheduled to come home Tuesday and will be transported here by ambulance. Of course Cameron gets sick this week! It's hard for me when he doesn't feel well eventhough it's probably just regular baby stuff because I'm so used to him being my "healthy" kid ( a relative term with them). He usually balances out the equation. So hopefully he will feel well enough to bring Brody home into a germ-free house on Tuesday.Staffing our nursing makes me want to rip my hair out. The thought of having people I don't know with me 24 hours a day in and out makes me want to rip my hair out. I'm anxious about them being here and having no provacy but more anxious about not having them here when my insurance knocks us down to 16 hours a day in 2 weeks. I'm sure we will be settled at that point and I will be begging for them to give us some space but it's still scary. Brody started eating by bottle again so we alternate bottle and g-tube feedings. He is so much happier since he gets his beloved bottle!
Its going to be so crazy to see Brody and Cameron together again, rediscovering eachother : ) I hope Cameron keeps his fingers out of Brody's trach! Oh how the concerns of a mother of sick preemies differs from that of most others...
Brody is 10lbs 12 oz and gaining. Hoping to see 11 lbs before he gets discharged. I'm sure Cam hasn't gained any weight being sick this week as he has been puking most of his meals and I am limiting his intake.
Cam saw the eye doctor who confirmed that everything still looks good in there and maybe glasses/contact lenses in 6 months. His vision therapist (who is one of the most wonderful, inspiring women I have ever met) is very encouraged and pleased with his progress as are Brett and I.
In conclusion...the summer leg of Cameron's World Tour 2011 is on hiatus until his brother can join the band. If you thought we were hard to get a hold of before... I have a feeling things are about to get even crazier than we have expereinced yet. Please stay patient with us... there WILL be a day when we can get out more easily, safely and freely. We miss everyone and we are counting down the minutes until Brody is healthy enough to join all of the festivities outside of the hospital/house.
In all of my free time I'm squeezing in a trip to Deep Six tomorrow night for my first (and only) tattoo. I am the last person anyone would ever think would get one but I found something I love in s discreet spot that is for my babies... I tear up just thinking about what this tattoo means for me. To brand their fight on me... to maybe experience the smallest fraction of the pain that they have endured. This has changed us all for life so I see a permanent reminder that I can wear with pride fitting.
Friday, June 3, 2011
Saturday, May 28, 2011
Wednesday, May 25, 2011
Pics
Resourceful way to keep paci in
I keep telling him that Elmo is NOT his twin brother
His come hither look
Butt!
Leggings... on the cutting edge of fashion
Look at me! I'm standing!
Hey, Ho, Let's Go!
Snuggles
Changing Expectations
The road to recovery for Brody has been a very slow slow one. It has been two weeks since we were told that he might not make it through the night and Brody is starting to feel better, look better and get back to the activities we had started with him before coming into the hospital. Our lows were similar to when we were in Michigan watching the clock waiting every second of the day to find out if Cameron would be sighted or not. But yet another lesson learned-expectations change daily. Healthy or not, our kids will suprise us and rewrite the story of how we thoought our lives would go. I can plan, plan, plan but Brody is the boss of me and is redefining how we live our lives daily. No expectations, just love and support to make them the best little boys they can be.
Brody lost a ton of weight after his infection. They were not giving him enough calories and then we stumbled across a random medication that I didnt recognize on his list of 15 per day... he was getting something for GI motility that never should have been prescribed. They put my preemie baby who is grossly underweight as it is on a diet and gave him a laxative! We dealt with that disaster and now Brody is 9lbs 12 oz. He will be in the hospital for another 3-4 weeks before they discharge him home. We don't know what level of respiratory support he will be coming home on. We're hoping he will not be ventillator dependant 24 hours a day and maybe just at night or when he's resting... we want to play!
Cam continues to be fantastic. We have been taking him on outtings more often. Yesterday we went to Rice's! Perfect mix..outdoors for the baby and shopping for mom : ) We had a great time. His visual therapy is going great and he continues to impress us with his level of progress. The retina specialist said everything still looks good with the eye anatomically. We go to the opthalmologist in July and we're counting down the minutes until we find out if he will need contacts yet. I would estimate he's probably 14 lbs but we'll see tomorrow when we go to the pediatrician.
I am officially not working... this was not part of the plan... but there is just no way that I can be all that I want to the boys and be on the road and in the OR all day. It was very hard making this decision as I have worked for the last 10 years to get to where I'm at professionally, but the kids need me. In 20 years I would not look back at this time and think "I regret not working" but I would regret not giving Brody and Cameron all of the medical, emotional and therapeutic attention they deserve. Its a short amount of my time for a lifetime of their happiness. There are many things I will miss about my job... the free company car didn't hurt either ; )
Brody lost a ton of weight after his infection. They were not giving him enough calories and then we stumbled across a random medication that I didnt recognize on his list of 15 per day... he was getting something for GI motility that never should have been prescribed. They put my preemie baby who is grossly underweight as it is on a diet and gave him a laxative! We dealt with that disaster and now Brody is 9lbs 12 oz. He will be in the hospital for another 3-4 weeks before they discharge him home. We don't know what level of respiratory support he will be coming home on. We're hoping he will not be ventillator dependant 24 hours a day and maybe just at night or when he's resting... we want to play!
Cam continues to be fantastic. We have been taking him on outtings more often. Yesterday we went to Rice's! Perfect mix..outdoors for the baby and shopping for mom : ) We had a great time. His visual therapy is going great and he continues to impress us with his level of progress. The retina specialist said everything still looks good with the eye anatomically. We go to the opthalmologist in July and we're counting down the minutes until we find out if he will need contacts yet. I would estimate he's probably 14 lbs but we'll see tomorrow when we go to the pediatrician.
I am officially not working... this was not part of the plan... but there is just no way that I can be all that I want to the boys and be on the road and in the OR all day. It was very hard making this decision as I have worked for the last 10 years to get to where I'm at professionally, but the kids need me. In 20 years I would not look back at this time and think "I regret not working" but I would regret not giving Brody and Cameron all of the medical, emotional and therapeutic attention they deserve. Its a short amount of my time for a lifetime of their happiness. There are many things I will miss about my job... the free company car didn't hurt either ; )
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