Funny thing happened the other day. We were talking about putting up our Christmas tree the day after Thanksgiving and I thought it would be nice to get an ornament that said "baby's first Christmas." Took me a minute to remember that this will be Zachary's second Thanksgiving and Christmas. We sort of missed the holidays last year since we were several months into his ultimate eight month stay in the hospital.
And what a difference a year makes.
This time last year he was critically sick with a blood infection that was threatening his life. His body had stopped ridding itself of fluid and his organs were starting to shut down. Although the doctors had maxed out on the medicine and respiratory support they could provide, his condition kept worsening. We were told it was almost time to turn off life support.
Then the most miraculous thing happened: He pooped and peed. Not normally cause for celebration. But his bowel movement and urination was a sign that his body was still functioning and giving him a fighting chance. The doctors still weren't too optimistic about his chances, but something told me that he had somehow turned the corner so to speak and was going to pull through.
We had some very rough patches over the next few months, including episodes in which he stopped breathing and had to be resuscitated and several serious intestinal infections. But, perhaps illogically, from Thanksgiving on I was confident that my little guy was going to make it.
So on this Thanksgiving we are thankful that Zachary is happy and getting healthier every day. Although we were told numerous times that he wouldn’t survive or could have severe physical and developmental problems, he has proven everyone wrong and is home and thriving after 249 days in the hospital.
We’re also thankful for the talented and compassionate doctors and nurses who cared for him and for his toughness and determination in the face of such long odds. We’re also thankful for all the support we’ve received from family, friends, and strangers who have helped us navigate this strange and difficult journey called prematurity.
And we pray for all the preemie miracles out there and give thanks for their perseverance and courage in continuing to overcome their early births.
Wednesday, November 23, 2011
Thursday, November 17, 2011
Prematurity Awareness Day
The March of Dimes estimates that one million babies worldwide died this year because they were born too soon and 12 million more are struggling to survive because of their premature birth.
We certainly have a special appreciation for how staggering these numbers are and what they mean in terms of day-to-day life. Those of you who have helped us through these past 13 months certainly are aware of the impact premature birth has both on these babies and their parents.
We thought this would be an appropriate time to say thanks to all of you who have thought of us, prayed for us, comforted us, fed us, and supported us as we have navigated the battlefield that is prematurity. Your kindness and friendship has made an immeasurable impact on our lives and helped us better care for Zachary both in the hospital and now that he is home. Words seem insufficient to express how much you mean to us or how thankful we are for your generosity.
So on this Prematurity Awareness Day we'll be thinking of you and counting our blessings as Zachary continues to overcome his prematurity. And we'll be saying a prayer for the babies who are fighting this fight and for those whose fights have been lost. May God bless them all.
We certainly have a special appreciation for how staggering these numbers are and what they mean in terms of day-to-day life. Those of you who have helped us through these past 13 months certainly are aware of the impact premature birth has both on these babies and their parents.
We thought this would be an appropriate time to say thanks to all of you who have thought of us, prayed for us, comforted us, fed us, and supported us as we have navigated the battlefield that is prematurity. Your kindness and friendship has made an immeasurable impact on our lives and helped us better care for Zachary both in the hospital and now that he is home. Words seem insufficient to express how much you mean to us or how thankful we are for your generosity.
So on this Prematurity Awareness Day we'll be thinking of you and counting our blessings as Zachary continues to overcome his prematurity. And we'll be saying a prayer for the babies who are fighting this fight and for those whose fights have been lost. May God bless them all.
Sunday, November 13, 2011
Odds and ends
Been a while since I last posted . . .
Zachary now weighs 14 pounds. He is gaining weight, but rather slowly. His Z-score (yep, that's really what it's called), or how far his weight is from the mean for kids his age, is -3.8, which is up from the -4.2 several weeks earlier. Not sure I really understand what that all means. Just know that when they graph his weight he's not even on the graph.
He's off the ventilator completely during the daytime now. He still uses the vent at night and requires oxygen nearly continuously, but the fact that he can breathe on his own for long stretches is good news for sure. And as Erin marvels, we're not sure how a kid with such bad lungs has as much energy as he does. He squirms and wiggles nonstop and jumps in his bouncy contraption for hours. We are expecting him to be admitted to the hospital sometime in the next month for a sleep study to determine whether he can keep his lungs inflated and properly oxygenate his blood at night without the pressure provided by the vent.
Got some great news at the last pulmonology appointment. They told us he could stop wearing the apnea monitor at night. That's the machine that shrieks when the heart stops or breathing ceases. It is great for him because it necessitated wearing a belt around his chest to hold electrodes in place. And good for us since the docs don't seem concerned that he might randomly stop breathing at night.
His feedings aren't going as well, unfortunately. He was taking most or all of his bottles by mouth during the day but now he is lucky to finish half. We give the remainder through his button (the feeding tube in his stomach) when he can't down the whole thing. Also been trying to get him to taste people food like bananas and pears and applesauce. He's not a big fan, though he'll take a few small tastes occasionally. Looks like this feeding thing is going to take some work.
Mommy and daddy are doing well. We are tired most of the time but thankful that our little munchkin man is doing so well and keeping us on our toes. The nursing situation had been relatively stable the past month or so, but that's going to change soon when we lose our primary day nurse and our primary night nurse takes some time off. Looking forward to the holidays though.
That's all for now.
Zachary now weighs 14 pounds. He is gaining weight, but rather slowly. His Z-score (yep, that's really what it's called), or how far his weight is from the mean for kids his age, is -3.8, which is up from the -4.2 several weeks earlier. Not sure I really understand what that all means. Just know that when they graph his weight he's not even on the graph.
He's off the ventilator completely during the daytime now. He still uses the vent at night and requires oxygen nearly continuously, but the fact that he can breathe on his own for long stretches is good news for sure. And as Erin marvels, we're not sure how a kid with such bad lungs has as much energy as he does. He squirms and wiggles nonstop and jumps in his bouncy contraption for hours. We are expecting him to be admitted to the hospital sometime in the next month for a sleep study to determine whether he can keep his lungs inflated and properly oxygenate his blood at night without the pressure provided by the vent.
Got some great news at the last pulmonology appointment. They told us he could stop wearing the apnea monitor at night. That's the machine that shrieks when the heart stops or breathing ceases. It is great for him because it necessitated wearing a belt around his chest to hold electrodes in place. And good for us since the docs don't seem concerned that he might randomly stop breathing at night.
His feedings aren't going as well, unfortunately. He was taking most or all of his bottles by mouth during the day but now he is lucky to finish half. We give the remainder through his button (the feeding tube in his stomach) when he can't down the whole thing. Also been trying to get him to taste people food like bananas and pears and applesauce. He's not a big fan, though he'll take a few small tastes occasionally. Looks like this feeding thing is going to take some work.
Mommy and daddy are doing well. We are tired most of the time but thankful that our little munchkin man is doing so well and keeping us on our toes. The nursing situation had been relatively stable the past month or so, but that's going to change soon when we lose our primary day nurse and our primary night nurse takes some time off. Looking forward to the holidays though.
That's all for now.
Tuesday, November 1, 2011
Prematurity Awareness Month
http://www.inspire.com/static/inspire/reports/inspire-preemie-nicu-narratives.pdf
November is Prematurity Awareness Month. Thought I'd share a very insightful report about surviving the NICU experience and parenting a preemie. We certainly can relate with many of the experiences that these parents have shared.
November is Prematurity Awareness Month. Thought I'd share a very insightful report about surviving the NICU experience and parenting a preemie. We certainly can relate with many of the experiences that these parents have shared.
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