a few days after we arrived in the nicu, one of our favorite nurses mentioned a "poem" about "going to holland". i stumbled upon it tonight. it brought a tear to my eye, but has a very good moral to it indeed. we've been thrown into a journey that is much different than what we had planned, but it is a journey none-the-less. and already i can't imagine my life without out sweet emerson despite the challenges her arrival has already presented. she still brings so much love and joy to our lives. and i've never appreciated my husband and the love we share any more than right now.
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Monday, February 28, 2011
Saturday, February 26, 2011
one day at a time
we've been taking it one day at a time, which makes it hard to believe that two weeks have already passed since our sweet Emerson was born. at 7:58 a.m. on Saturday, Feb. 12th, she came into this world. i wish i could say she was kicking and crying when she joined us, but she wasn't. but these days, she's got both kick and cry, and we're very thankful for that. in these two short (yet arduously long) weeks, she has made giant strides and progressed for the better each day. we are so proud of her. girl's got fight! and we are so blessed to have seen miracles at work over the past several days as well.
so here's a little retrospective of her life so far. she has changed so much already. you wouldn't even recognize her from day one until now if you didn't know better.
saturday, feb. 12
sunday, feb. 13
monday, feb. 14
tuesday, feb. 15
wednesday, feb. 16
thursday, feb. 17
friday, feb. 18
sunday, feb. 20
monday, feb. 21
tuesday, feb. 22
wednesday, feb. 23
friday, feb. 25
saturday, feb. 26
so here's a little retrospective of her life so far. she has changed so much already. you wouldn't even recognize her from day one until now if you didn't know better.
saturday, feb. 12
sunday, feb. 13
monday, feb. 14
tuesday, feb. 15
wednesday, feb. 16
thursday, feb. 17
friday, feb. 18
sunday, feb. 20
monday, feb. 21
tuesday, feb. 22
wednesday, feb. 23
friday, feb. 25
saturday, feb. 26
Wednesday, February 23, 2011
where we are
i know there are lots of questions swirling around about where we are with everything. the days are blending together and i have no idea who i've told what or what i've posted where. so i'll just tell you everything i can think of at this point regarding where we are.
what we know:
--an MRI detected two small spots of injury on Em's brain (the basal ganglia to be precise). this injury is due to the oxygen she was depleted of during birth. she was taken out by emergency c-section after her heart rate dropped drastically and unexpectedly all of a sudden and didn't come back up. she wasn't breathing when she was born and had only a faint heart beat. doctors worked emphatically to resuscitate her and were successful by the grace of God.
--an EEG of her brain this week shows she has totally normal brain activity.
--an EKG shows her heart is perfect as are all of her other organs.
--she has progressed from being on a ventilator to supplemental oxygen to breathing entirely on her own. she also progressed from an IV feeding her through her belly button to a feeding tube that feeds breast milk (and some formula when I'm unable to keep up with the demand) into her stomach.
--she has picked up coughing, sneezing, crying, some sucking and very minimal swallowing in the 10 days since she was born. these are big strides!
what we don't know:
--when she'll be able to fully suck and swallow enough on her own to pick up nipple feeding. this affects when she'll come home with us. the goal is she'll come home when she can eat.
--how the damage to her brain will affect her long term. there is the possibility that her little brain can bypass these areas and rebuild around them and not cause her any long-term consequences. but we won't know for sure until we watch her grow and develop.
and i think that gets us up to speed. we are filled with hope and optimism. we have already seen little miracles every day and the impact of your prayers. thank you to all who have supported us, those we know and those we've never met, from near and far. i can't even express how humbled i am by your compassion.
and with that, i'll leave you with a photo of dear sweet dad holding little Miss Em today during his first time with "kangaroo care" (ie: skin-to-skin contact). i'm not sure which of them enjoyed it more.
what we know:
--an MRI detected two small spots of injury on Em's brain (the basal ganglia to be precise). this injury is due to the oxygen she was depleted of during birth. she was taken out by emergency c-section after her heart rate dropped drastically and unexpectedly all of a sudden and didn't come back up. she wasn't breathing when she was born and had only a faint heart beat. doctors worked emphatically to resuscitate her and were successful by the grace of God.
--an EEG of her brain this week shows she has totally normal brain activity.
--an EKG shows her heart is perfect as are all of her other organs.
--she has progressed from being on a ventilator to supplemental oxygen to breathing entirely on her own. she also progressed from an IV feeding her through her belly button to a feeding tube that feeds breast milk (and some formula when I'm unable to keep up with the demand) into her stomach.
--she has picked up coughing, sneezing, crying, some sucking and very minimal swallowing in the 10 days since she was born. these are big strides!
what we don't know:
--when she'll be able to fully suck and swallow enough on her own to pick up nipple feeding. this affects when she'll come home with us. the goal is she'll come home when she can eat.
--how the damage to her brain will affect her long term. there is the possibility that her little brain can bypass these areas and rebuild around them and not cause her any long-term consequences. but we won't know for sure until we watch her grow and develop.
and i think that gets us up to speed. we are filled with hope and optimism. we have already seen little miracles every day and the impact of your prayers. thank you to all who have supported us, those we know and those we've never met, from near and far. i can't even express how humbled i am by your compassion.
and with that, i'll leave you with a photo of dear sweet dad holding little Miss Em today during his first time with "kangaroo care" (ie: skin-to-skin contact). i'm not sure which of them enjoyed it more.
Monday, February 21, 2011
"cautiously optimistic"
this was the description Emerson's neurologist used today in describing her prognosis. although we didn't receive many definitive answers, our meeting with her team of doctors and caregivers offered lots of hope and renewed positivity. the bottom line is what we've been hearing all along: we just have to wait and see. wait and see how she progresses in the short and the long term. but there is definitely hope that her little brain, which sustained injury from the lack of oxygen at birth, has the ability to recover over time. if any brain has this capability, it is the resilient brain of a baby. so this is what we pray for.
today also showed us some more baby steps toward her independence. her oxygen tubes which have been intrusively taped across her face and into her nose were removed today. she is maintaining good oxygen levels entirely on her own. it's so nice to get rid of those things and see her little face shining through. in fact, she only has one intrusive tube left, the feeding tube that still runs from her nose to her stomach. this will be the big factor in getting our Emmy home. we are still likely weeks from getting to take her home with us which probably won't happen until she is able to eat on her own. but we know she is best served in the NICU where she can continue to receive the best possible care.
here's a shot of her this afternoon (sans the oxygen tubes at last) sleeping soundly.
thank you to all who have been following our story, sending such positivity and praying for us. we truly believe you are making a difference and appreciate each and every one of you.
today also showed us some more baby steps toward her independence. her oxygen tubes which have been intrusively taped across her face and into her nose were removed today. she is maintaining good oxygen levels entirely on her own. it's so nice to get rid of those things and see her little face shining through. in fact, she only has one intrusive tube left, the feeding tube that still runs from her nose to her stomach. this will be the big factor in getting our Emmy home. we are still likely weeks from getting to take her home with us which probably won't happen until she is able to eat on her own. but we know she is best served in the NICU where she can continue to receive the best possible care.
here's a shot of her this afternoon (sans the oxygen tubes at last) sleeping soundly.
thank you to all who have been following our story, sending such positivity and praying for us. we truly believe you are making a difference and appreciate each and every one of you.
Sunday, February 20, 2011
when life gives you lemons
such a weak cliche to describe our situation. but really, what else can we do but try our best to turn a bad situation into something better.
we certainly never expected it to turn out like this. it's been a week and a day since sweet Emerson Grace was born. in many ways, it seems like months and in other ways it seems like moments ago. if things had gone the way we expected, we would be home right now with our perfect baby girl. to think i was afraid of the lack of sleep, the crying all night, the diaper changes! wow, that all seems so insignificant at this point. what i wouldn't give to have it that way. but we don't. so we've had to adjust the way in which we view things. we likely won't ever have the baby we envisioned. but one thing i could have never anticipated was the overwhelming love we feel for this baby. it's just not something you can explain to someone who has never had a child. there is magic when you look into those eyes and an instant unconditional bond that can't be broken.
so yesterday was rough. we were coming to some of the realizations that our path had taken a different course and our lives would likely never be the same. we always knew having a child would change our lives forever, but never did we think it would be changed this drastically. of course, we don't totally know what the big picture is going to look like. it's still a waiting game. but to prepare ourselves, we must expect the worst and hope for the best. that said, after two rough days, today was another good day. we were told there were extreme ups and downs in the NICU and we've already learned this in the last week.
today, Emmy sneezed and coughed. this may not seem like a big deal for the average baby, but for our Emmy, it is. one of her big challenges right now is that she doesn't have some of the natural reflexes babies are typically born with because of the lack of oxygen she experienced at birth. specifically, she doesn't swallow and has a weak suck. and up until today, she didn't really gag or cough. this is why she is unable to nurse or suck from a bottle. she is fed through a feeding tube in her nose. so please pray for her to regain these very necessary reflexes so someday she can eat through her mouth.
she's also been being supplemented with oxygen, but for the most part, today she was staying oxygenated on her own. the oxygen tubes remain on just in case she should need them, but we look forward to them coming off for good.
today, i held her for hours while she slept soundly. adam held her too. i read her two books, while she looked on with eyes wide open. she seemed alert and listening. we also set up a CD player for her and she is now listening to lullabies courtesy of her dear father.
tomorrow is a big day. she will get a hearing screening and an MRI to determine what exactly is going on with her brain. and at 2 pm Adam and i have a conference with her doctors and neurologist to get a more complete picture of her prognosis. we've had many questions and gotten few answers while everyone waited to see what was going to happen. we feel she has made progress. we shall see what the doctors have to say. we are scared and hopeful at the same time.
until then, i leave you with these photos that my sister so artistically shot of all her various sweet little parts.
we certainly never expected it to turn out like this. it's been a week and a day since sweet Emerson Grace was born. in many ways, it seems like months and in other ways it seems like moments ago. if things had gone the way we expected, we would be home right now with our perfect baby girl. to think i was afraid of the lack of sleep, the crying all night, the diaper changes! wow, that all seems so insignificant at this point. what i wouldn't give to have it that way. but we don't. so we've had to adjust the way in which we view things. we likely won't ever have the baby we envisioned. but one thing i could have never anticipated was the overwhelming love we feel for this baby. it's just not something you can explain to someone who has never had a child. there is magic when you look into those eyes and an instant unconditional bond that can't be broken.
so yesterday was rough. we were coming to some of the realizations that our path had taken a different course and our lives would likely never be the same. we always knew having a child would change our lives forever, but never did we think it would be changed this drastically. of course, we don't totally know what the big picture is going to look like. it's still a waiting game. but to prepare ourselves, we must expect the worst and hope for the best. that said, after two rough days, today was another good day. we were told there were extreme ups and downs in the NICU and we've already learned this in the last week.
today, Emmy sneezed and coughed. this may not seem like a big deal for the average baby, but for our Emmy, it is. one of her big challenges right now is that she doesn't have some of the natural reflexes babies are typically born with because of the lack of oxygen she experienced at birth. specifically, she doesn't swallow and has a weak suck. and up until today, she didn't really gag or cough. this is why she is unable to nurse or suck from a bottle. she is fed through a feeding tube in her nose. so please pray for her to regain these very necessary reflexes so someday she can eat through her mouth.
she's also been being supplemented with oxygen, but for the most part, today she was staying oxygenated on her own. the oxygen tubes remain on just in case she should need them, but we look forward to them coming off for good.
today, i held her for hours while she slept soundly. adam held her too. i read her two books, while she looked on with eyes wide open. she seemed alert and listening. we also set up a CD player for her and she is now listening to lullabies courtesy of her dear father.
tomorrow is a big day. she will get a hearing screening and an MRI to determine what exactly is going on with her brain. and at 2 pm Adam and i have a conference with her doctors and neurologist to get a more complete picture of her prognosis. we've had many questions and gotten few answers while everyone waited to see what was going to happen. we feel she has made progress. we shall see what the doctors have to say. we are scared and hopeful at the same time.
until then, i leave you with these photos that my sister so artistically shot of all her various sweet little parts.
Wednesday, February 16, 2011
we had a wonderful day
can't believe it's already been four days since our little angel arrived. my how time flies. and the wonderful news is yesterday was finally a good day. tuesday was a rough one. emerson hadn't changed much from monday and still hadn't slept a wink since her arrival early saturday morning. that's a long time to be awake for such a tiny little body! the overwhelming exhaustion on top of everything she is fighting was just too much and she was extremely uncomfortable and fussy. we watched in agony as she struggled all day. finally, tuesday evening, she started to settle a bit and have moments of rest, but wasn't able to fully relax and zonk out. about 11 pm tuesday night, i went up to check on her and she was getting close to sleep. so i pulled up a chair, put my hand on her sweet head and worked my mommy magic. and she slowly drifted into a deep peaceful sleep. i sat like this for 45 minutes, scared to move a muscle in fear of waking her, but finally started to move my hand away. just as i did, she started to stir and open her eyes so i quickly put my hand right back and she didn't wake up. 15 minutes later, the nurse helped me replace my hand with a little cushion and she was none the wiser. knowing she was finally peaceful and sleeping, mommy snagged some much needed sleep myself. i checked on her all throughout the night and she continued to sleep, limp as a little noodle, with all of her vital signs remaining strong. all day yesterday was much of the same with her snoozing away, catching up with the long overdue sleep and allowing her little body to mend. it was glorious to see her so calm and peaceful throughout the day.
so we let her be and let her sleep despite my desire to pick her up and snuggle her to pieces. the doctors also confirmed she was moving in the right direction. with all this positive change, i was finally able to get my emotions in check a bit, rest, eat and get serious about pumping. and pump we did! we made progress, slowly evolving from mere drops of colostrum in the morning, to filling up syringe after syringe to deliver to the nurses. they are giving her tiny little drops to swish around in her mouth, but haven't fully started feeding it to her yet as she's still working on figuring out how to swallow and already has a whole lot of extra secretions to deal with constantly.
my mom, sister and the boys had spent the day at the long beach aquarium, but stopped by for a visiting that evening. kris was dying to see emmy, so we zoomed up before the nurse shift change when visiting hours are suspended for an hour. once again, she was sleeping soundly and kris snapped this picture.
last night around 7:30, adam and i went up to visit and received the most wonderful gift. the nurse asked if i wanted to hold her. i was reluctant to get her out of her bed as i didn't want to interrupt this marathon of healing rest. but she was stirring a bit, and i really did want to hold her, so we decided to give it a go. adam was with me and we had the sweetest little family moment. i rocked her and adam talked to her while she kept staring at his face listening intently. then i sang her a song. i couldn't think of one lullaby. . .guess i better freshen up on those. . .so i made one up just for her. and i think she liked it because she was soon fast, fast asleep. words can't express what a wonderful moment it is to first have your baby fall asleep in your arms. it was the greatest feeling in the world. so i stayed and rocked for hours. but it was soon evident that i desperately needed to pump again and that i was way overdo for my pain meds. so i reluctantly turned her back over to the nurse, but said i would be back. i returned at 1:30 am baring my bounty and she was awake and a little agitated. so pulled up a chair and helped calm her back down. i used my magic hand on forehead trick and she was soon jello again. when i returned at 4:30 am, she was still asleep, so i headed back down to catch a few z's myself. and that brings you up to speed.
i so wish i had a photo of her sound asleep in my arms. but i will always have a picture in my head with that beautiful moment. and now, i am off to do my mommy routine all over again today.
thank you to all of kris' (and my own) wonderful friends who have stopped by to show your support. you all are amazing and i appreciate all of your loving words and support. we are truly blessed to have so many people across the nation praying for us and i am humbled by the kindness and generosity. THANK YOU ALL!
so we let her be and let her sleep despite my desire to pick her up and snuggle her to pieces. the doctors also confirmed she was moving in the right direction. with all this positive change, i was finally able to get my emotions in check a bit, rest, eat and get serious about pumping. and pump we did! we made progress, slowly evolving from mere drops of colostrum in the morning, to filling up syringe after syringe to deliver to the nurses. they are giving her tiny little drops to swish around in her mouth, but haven't fully started feeding it to her yet as she's still working on figuring out how to swallow and already has a whole lot of extra secretions to deal with constantly.
my mom, sister and the boys had spent the day at the long beach aquarium, but stopped by for a visiting that evening. kris was dying to see emmy, so we zoomed up before the nurse shift change when visiting hours are suspended for an hour. once again, she was sleeping soundly and kris snapped this picture.
last night around 7:30, adam and i went up to visit and received the most wonderful gift. the nurse asked if i wanted to hold her. i was reluctant to get her out of her bed as i didn't want to interrupt this marathon of healing rest. but she was stirring a bit, and i really did want to hold her, so we decided to give it a go. adam was with me and we had the sweetest little family moment. i rocked her and adam talked to her while she kept staring at his face listening intently. then i sang her a song. i couldn't think of one lullaby. . .guess i better freshen up on those. . .so i made one up just for her. and i think she liked it because she was soon fast, fast asleep. words can't express what a wonderful moment it is to first have your baby fall asleep in your arms. it was the greatest feeling in the world. so i stayed and rocked for hours. but it was soon evident that i desperately needed to pump again and that i was way overdo for my pain meds. so i reluctantly turned her back over to the nurse, but said i would be back. i returned at 1:30 am baring my bounty and she was awake and a little agitated. so pulled up a chair and helped calm her back down. i used my magic hand on forehead trick and she was soon jello again. when i returned at 4:30 am, she was still asleep, so i headed back down to catch a few z's myself. and that brings you up to speed.
i so wish i had a photo of her sound asleep in my arms. but i will always have a picture in my head with that beautiful moment. and now, i am off to do my mommy routine all over again today.
thank you to all of kris' (and my own) wonderful friends who have stopped by to show your support. you all are amazing and i appreciate all of your loving words and support. we are truly blessed to have so many people across the nation praying for us and i am humbled by the kindness and generosity. THANK YOU ALL!
Monday, February 14, 2011
serious love this valentine's day
Emerson Grace is here. All 6 lbs, 7 oz and 20.5 inches of her. She is the most beautiful thing you've ever seen with big blue eyes (so far) and a plush head full of hair. But she needs your prayers. She entered this world in traumatic fashion. . .went into distress during my long labor and had to come out via a "crash" c-section. She swallowed meconium in the womb and came out without the capability of breathing on her own. She also had the cord wrapped around her neck. . .loosely thank God. It took her several minutes to come around and she needed a breathing machine for awhile. She's breathing now, but it's a laborious thing for her to do. She has pneumonia and the trauma of her birth has left her seriously shaken. It'll be a long road of recovery. She needs all the love and support possible to get her back to health. I am in the hospital until Wed. recovering. Miss Emmy will be in the NICU longer, but how long we are unsure at this time. Daddy is putting the rock in rockstar and I can't imagine having anyone else by my side to go through this challenging time with. He says and does all the right things. So on this Valentine's Day, this sweet baby and my dear baby daddy really put the whole love thing into perspective. I now know more love than I've ever known before.
1 day old
1 day old with a proud papa (she's not lookin too happy in the background)
2 days old
2 days old. . .so great to finally hold her!
and we're also feeling the love of my mom, sister and sweet nephews who arrived yesterday! so thankful they are here with us right now.
1 day old
1 day old with a proud papa (she's not lookin too happy in the background)
2 days old
2 days old. . .so great to finally hold her!
and we're also feeling the love of my mom, sister and sweet nephews who arrived yesterday! so thankful they are here with us right now.
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