home is where the heart is

this swing is our saving grace. emmy likes perpetual motion. so this is where she sleeps each night. thank you rachel for getting this for her!

she's also a big fan of dad. after a long session of crying, she usually ends with a deep sigh and a cute little "rosebud" face like this. dad holding her is usually a good way to get to the successfully soothed rosebud face.

release me

we have a release date in site! it looks like monday, march 28th will be the magical day we get to bring our emerson home if all goes well. she will be 44 days old.

she has recovered well from her g-tube surgery and we've begun to learn how to use it. it's been a little overwhelming. we kind of feel like we've been given an advanced trigonometry test to complete and we haven't even passed pre-algebra yet. but we're slowing getting over the shock and the unfamiliarity of all of this and the anger of why my baby has to have a tube coming out of her belly. because. . .well we have to!

we met with her team of doctors today and received some good news. they did a sleep study this week to ensure she isn't having any issues with breathing or heart decelerations or anything else unusual we need to worry about when she's home. she had no issues and therefore, we will not have to use any monitors when she comes home. this is a big relief for us. so her only medical equipment will be the feeding tube and a suction machine that will hopefully get minimal usage.

we also met with the home nursing company who will provide our nurses when we get home. it looks like we will not need round the clock nursing. but we will need a nurse about 40 hours a week or so. this will ensure adam and i can both work and will also help supplement our care as emerson will require a bit more energy than your average baby.

so all in all, things are moving ahead. we still have our ups and downs, of course, and are still trying to come to terms with this hand we've been dealt. sometimes i feel totally upbeat about it and other times i feel completely deflated. i'm trying my best to get to a place of acceptance.

to all who continue to pray for us and support us with your sweet messages, thank you. i know we haven't (me in particular) been great about responding. but know that your thoughts and words mean so very much to me. lots of love.

sleeping beauty

chapter two

well today was a milestone. emmy had her surgery this morning to place the g-tube in her stomach. oddly, adam and i were both excited about this surgery knowing that this was the next step in getting our baby girl home. going back to our holland analogy, this isn't the typical way in which to bring a baby home, but nothing is typical these days. and we're just ready to have her home and begin our lives together.

so we arrived at the hospital bright and early to see her off to her surgery. she was a little grumbly, likely a little hungry. the whole process was quick and only took about an hour. it was a bit nerve wracking, but she came through it just fine. once again proving how strong she is and what a little fighter she is.

so now we get to learn about this g-tube and how it all works. here we thought we'd be learning about breast feeding and bottles and maybe even formula. but our path is different. and we're just happy to have a reliable way to ensure our baby gets the nutrients she needs until she able to eat on her own. and we're confident that day will come.

now for the best part. . .no more tubes or tape on our sweet girls face!

say a little prayer for me

http://thissweetcountrylife.blogspot.com/2011/03/say-little-prayer-for-me.html

Another fundraiser for sweet Emmy G

Thanks to our friends at Boost-Radio.com

great expectations

sorry for the lag in posting. i guess you could say it hasn't been my top priority as we're learning to live in this new world we've been thrown into. i'm trying my best to stay positive and hopeful about the future. and to remember that we won't be given more than we can handle. i have to admit, i've already felt like it was more than i can handle. but then i try to stop, breath and put one foot in front of the other. sometimes it helps. sometimes, i continue to feel like we're living in an alternate universe. and sometimes i think i'll wake up from this horrible dream at any minute. but i know it's not a dream. and for the love of our sweet baby, we must march on. so with all these mixed emotions, it's been tough to wrangle a clear enough thought to write a simple blog post. but here goes anyway.

every day we get so many emails, calls and texts asking how emmy is, how we are, how everything is. i guess the universal answer is "ok". all is as good as can be expected considering the situation. emmy remains in the hospital. she is doing well, but our big hurdle continues to remain how she will develop over the long haul. keep in mind her brain was injured. the part that was injured controls her motor development. it's tough to say how much effect this will have on her when she is this young. currently, it's causing her problems with eating, sucking and swallowing to be specific. this is something she can learn, but it will take a great deal of work. she's been working on it every day. we have some good days and some bad days. in the meantime, she will be getting a feeding tube surgically inserted in her belly to ensure she continues to get proper nutrition. we pray this is not permanent, but rather just a stepping stone.

other developmental delays, if any, won't surface until down the road. so it's just a wait and see situation.

as for when she'll come home. we also don't know the answer to this question. her feeding tube surgery is planned for next thursday. provided that goes well and she recovers quickly, i'd guess she'd be home in the week or two following. but doctors really haven't given us a schedule. i guess there is no rush. although fearful of what it'll be like when she comes home, part of me can't wait to get her here. endless hours at the nicu have worn heavy on my heart and soul. and really, we are just ready to get her home and move forward with our lives, no matter how different that may be.

on a final note, words cannot express how grateful we are for the outpouring of love, support and donations that our friends, family and even complete strangers have showered us with. thank you doesn't seem like enough of a sentiment to convey how appreciative we truly are.

something big

wow. this post nearly renders me speechless. leave it to my sister to write something so specific and accurate about the experience i am going through. i could not express it better myself, so i'll leave you with her beautiful words instead:

http://thissweetcountrylife.blogspot.com/2011/03/post-in-which-i-ask-something-of-you.html

thank you kris. i love you.

the sweetest thing

emerson's fundraising page

i was hesitant to share this as i'm just not one to ask for help. but many have asked how they can help, so here goes.

one of the scariest realities of emerson's condition is the expense of the care and therapy she is going to require. my friend amanda so generously established a fundraising page for us, so that we can begin to raise money toward that effort. we have applications pending with various state organizations that may or may not assist us, but no telling how long that whole bureaucratic process will take or if we'll even get approved. so the fact that she'll be coming home soon and will need a full-time nurse is pretty daunting.

it's amazing to me that amanda has already raised more than $500 from people who don't even know me. . .a testament to the generosity of strangers! so if you feel so inclined, please share this link with your network of friends as well. . .every little bit helps.

http://helpoutlittleemersongrace.blogspot.com

and thank you.

tulips in holland

today was a good day in holland. in this new travel destination we've been thrown into, we've already learned there are extreme highs and extreme lows. after a few low days, i'm happy to report that today we finally found some of those tulips i'd heard about.

as i was heading out the door this morning to the nicu, i received a call from the hospital. never good to see that number pop up on the phone because you instantly worry. fortunately, everyone that calls from that number knows and instantly says "emerson's fine" as soon as you answer. but then she went on to report that emerson had shown some good improvement in an initial therapy session in the morning and that i should bring some toys for her. . .something that rattled and something that had a soothing sound. . .because she was ready for some more stimulation.

upon arrival at the nicu, e was awake, but quite content. usually she's either sleeping peacefully or awake and fussy. so to see her awake, alert and happy all at once was a nice change. we hung out for a bit and then the physical therapist came over to work with her some more and show us some new mouth exercises with the pacifier. up until this point, she has hated the pacifier. but today she had a breakthrough, and slowly started allowing the pacifier to rest in her mouth. and then. . .she actually started sucking on it! such a small step for man. . .but a giant leap for baby emmy. we worked with the paci for quite awhile and she became more and more comfortable with it. and seeing her little mouth making those sucking motions was just about one of the sweetest sights i've ever seen.

the other major breakthrough today was her ability to handle her secretions. essentially, we are all subconsciously swallowing our own spit all the time and don't even know it. for a baby with a weak swallow reflex, she has trouble controlling all that extra drool and was having to have the extra suctioned by the nurses. she hated it and it was causing her some oral aversions. well today, she seemed to be handling her secretions much better and upon leaving the nicu about 30 minutes ago, she had only had to be suctioned once in the morning and had no problems at all. again, a small step in an ordinary situation, but a giant stride for our baby girl.

and so, on a day when we really needed to see something happen, we did. we saw progress. and that is all we can really ask for.

wanna see something funny?

this is the birth plan i so carefully researched, considered and drafted to ensure i would have the best possible birth experience:

i got a private room and that's about all.

in other news, looks like the doctors are moving Emmy towards a discharge date. the date hasn't been set, but plans are already in process. although we are excited at the prospect of getting her home, it is also very scary and a bit overwhelming. next week we will continue observation of her condition. unless there is significant improvement in the sucking/swallowing realm, they will move forward with surgically placing a g-tube, which will be her feeding mechanism until she does learn to eat with her mouth. again, another scary undertaking for us, but we are trying to make the best of it. we will also likely need a full-time nurse to assist with her care. again, scary. we're not sure where all the funding for her extra needs will come from. we are just trusting it will all work out. i see a fundraiser of some sort in our future. in the meantime, please keep us in your thoughts and prayers. and to all who continue to do so and leave us encouraging and hopeful comments, thank you.