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WELCOME, GUEST |
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(3 members)
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liyahs0236 |
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Donna S6 |
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LILY'S JOURNAL
Stephen Beck |
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| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | 1 | | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 |
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5 MONTHS!
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Mar 30, 2009 02:38pm (EST)
Testing… Is this thing still on? (Blows into microphone…) One? Two? Hello!?
Greetings to everyone this Sunny but cold Monday, March 30, 2009! Today is Lily’s 5-month birthday! You’d never know it by looking at her skinny 6lb little body, but 5 months it is! Having her home has just been incredible! All the things we wished we could do with her while in the NICU, we’re doing! Sort of. This wish list mainly consisted of holding, snuggling, hugging, kissing, etc all within the confines of our home! Check! Done and done! Day after day!
She came home with a bit of baggage, however, but it’s all worth it to have her home. She’s on an Apnea Monitor which watches her breathing rate and her heart rate. The alarm is as loud as they come. Find one of your fire alarms in your house… Press the test button and… yeah… Her’s is louder than that. Sleep tight! Booo! Thankfully, it almost NEVER goes off. If it does, it’s usually because the leads on her chest have wiggled loose. Information from this will be downloaded and evaluated in the next week or so and they’ll evaluate as to whether or not she needs it anymore or not. Hoping it goes away… One less thing attached to my kid!
She’s also on oxygen. She’s currently at ¼ liter flow per hour which is what she came home on. We’d taken a bit of a step back and bounced her back up to ½ liter but we’re back where we started and today’s O2 check says we should stay there for at least another week. Slow and steady as always with this little one. I now know everything there is to know about compressed bottled gasses. (No jokes, here people!) We have tanks of all shapes and sizes about the house. Little portable guys that travel with her and giant “Double M” tanks in the basement and our bedroom. I did some research after bringing her home and convinced our medical supply company to provide and Oxygen Concentrator which I think is the bee’s knees. It’s smaller than a dehumidifier and pulls O2 out of room air and delivers the desired flow without refillable bottles. Peace of mind as we’ll never “run out” of O2 during a weekend, etc.
Lily rarely ever leaves the house. And we’re trying not to bombard her with visits. We are trying to protect her lungs from any and all bugs that might try to get at her but this is difficult as her fan base is vast! We’ve only run errands with her once (it was a great feeling!) and only has left the house previously for Dr. Visits. Pediatrician, Ophthalmologist and Apnea Clinic are the usual. She is also visited by an in home nurse twice a week. Her ROP is much better and we believe will grow beyond needing surgery.
Her weight gain has slowed but she’s still growing. Hasn’t lost any weight yet. She’s eating every 3 hours on button night and day so that’s wearing on the household member who is “food provider” for Lily but spirits are always high and always thankful that we have her at all! Big sister Lindsey has been supremely helpful and great with Lily! Helping with tubby time, changing clothes and even a feeding or two. Turns out kids 6 years apart has an advantage or two!
Overall, we’re doing superfantastic. Easter is creeping upon us and the hunt for care for Lily as mom prepares to head back to work is in full swing. Thanks again to all for asking about her and kicking me to write another entry. Hope to see you all soon, rather than just writing to you!
Love to all,
Steve, Kelley, Lindsey and Lily B.
PS: I had meant to send a link to this a long time ago (back when it was created) but never got around to it. For those of you who haven’t seen Lily’s video “Winter Song” on Facebook feel free to check it out here: http://www.vimeo.com/captinmrgn. It was made during probably the height of our anxiety while Lily was hospitalized and the music is reflective of this. She’s home now and things are wonderful, but this piece captures that moment of her life pretty well. …Oh, and if you’re not a friend of Kelley and mine on Facebook yet… Come on!!! Get on the good foot!
I Can't Put My Arms Down!
Possibly the Greatest Pic Ever
98- 99- One Hundred!
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Posted by Stephen Beck | Comments: (7) | Permalink
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LILY IS HOME!!!
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Feb 26, 2009 08:26pm (EST)
She is home! We are home!!! As I type, my 3 girls + a couple curious kitties are snuggled up in our very own basement!
THIS IS THE BEST DAY EVER!!!
Lily is sleeping soundly and snuggled up in her 2nd or 3rd outfit of the day... Lindsey is so sweet. She rubs her little head and makes sure her hat is on straight. Kisses her on the head and brings her stuffed toys.
The NICU got 3 new admits last night and this morning so rounds took longer than usual. Lindsey had a music program at school today so we decided to go see the extravaganza, then nab Lily immediately following.
The discharge from St. Joes was incredibly emotional. Kelley fed her last bottle "in custody" and we started packing her up. Detached her leads from the hospital monitors and connected our portable unit. I set up our portable oxygen tank and unplugged her from the NICU wall and we were mobile!!! We were then run through the volumes of paperwork that now follow us wherever we go. I can't tell you how incredible it was to watch the monitors and equipment we've stared at for so long shut off for good.
Soon we were loading her into the truck and we were on our way! A simply unbelievable feeling. Made a quick stop by Lindsey's school to pick her up and the 4 of us arrived home together and so here we are!!! 119 days and we're finally home!
There's so much in my head that may or may not make it out onto these pages but I did want to make sure to publicly recognize those who have made this day possible for us through their tireless efforts, day in and day out. Written below is a transcript of a note we left behind for the Dr's, Nurses and Staff at St. Joseph Mercy. Our little Lily is home and first in the long list of thank you's has to be extended to these beautiful individuals!
Feb 26th, 2009
To the Dr’s, Nurses and Support Staff at St. Joseph Mercy Hospital Neonatal Intensive Care Unit:
While there is no possible way to express how deeply thankful our family is to you all for your dedicated and unwavering professionalism, compassion, and outright outpouring of love for our daughter Lily Elizabeth – I feel compelled to at least “try.”
119 days ago… Seems like forever that our “24 week” Lily was prematurely brought into the world. You have all collectively helped us through this terrifying journey – and without you – we couldn’t have done it. You have given us the greatest gift anyone can give another. The gift of a beautiful, chubby, snuggly baby girl that we will love, cherish and spoil for as long as she’ll let us.
You have lifted us up in the darkest of times, consoled us, nurtured us, taught us and listened to us. You’ve made us laugh and the generosity of your time and effort for our daughter has brought us to tears. Day-long, week-long, month-long vigils by her side nursing her through the literal limits her tiny body could withstand and back.
You have tolerated our questions. Our phone calls. Spent Halloween, Thanksgiving, Christmas and rang in the New Year with us in quiet celebration at her bedside. You have witnessed her baptism. You have become our extended family… and most importantly, our friends. I feel compelled to remind you all what an incredible team you all are. In your day to day lives, please also remember that the things you accomplish in a single shift – will do the world more “good” than many people accomplish in their entire lives. You are a special group.
Lily’s survival story has not just changed our immediate family’s life. The ripple effect of Lily’s birth announcement and storied journey has touched untold numbers of lives as well. Know that hundreds of individuals have lifted you all and our daughter in prayer on a daily basis since her arrival. People who have never even met us have been touched by Lily’s story and been compelled to write unimaginably wonderful notes of support.
Although we cannot wait to bring our baby home, we will miss time spent in the NICU with you all. We’ll miss keeping up on your lives. We’ll miss our “baby neighbor” families. We’ll miss flowers for Lily’s sister Lindsey. We’ll miss chatting about inane TV shows and all things non-preemie related. Mostly we’ll miss hearing about your children, husbands and wives.
Please accept our thanks and gratitude for all you’ve done for us. You have affected us in ways I’m not sure we even know yet. We look forward to sharing Lily updates with you all… And can’t wait to see and talk to you down the line.
Lily Elizabeth Beck was born October 30th, 2008 at 24 weeks gestation, 600 grams and is coming home with us today. Thank you all so much – with everything we can muster!
Love to all,
Lily, Lindsey, Kelley and Steve
www.shareyourstory.org/lilyelizabeth
Party Balloons
Last Huggs
Playtime!
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Posted by Stephen Beck | Comments: (17) | Permalink
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Feb 18, 2009 02:56pm (EST)
The Explorer backs out of the driveway, and heads North on Normanwood. Depending on how rushed we’re feeling I’ll either head left – the scenic route - between Orchard and Pine Lakes or – the quick route – Long Lake to Middlebelt. In my mind as I write… I’ll take the quick route East on Long Lake. It’s dusk and cold after a long workday. I’m amused by the 50’s style old house on my right that has a great old screened in porch on Long Lake – and still has half a string of Christmas lights (the big fat old color lamps…) shining half-heartedly every night. Tonight is no exception. We hit Middlebelt and turn left heading North at the tiny old schoolhouse-turned-home that was the original Pine Lake School. To the right we’ll pass two homes, recently redone that have caught my fancy as of late. The southernmost one has been painted a forest green with white trim and rests on Upper Long Lake’s shore. The Northernmost and my favorite is a nautical blue and white trimmed home on Hammond Lake. Someday we’ll paint the outside of the Iverness house, but not anytime soon…
North past Square Lake Road and continuing right on Orchard Lake toward Pontiac. There’s a “Glove and Safety” store on this stretch that always makes me chuckle. An entire store for gloves. Does it get any better? Through some old Pontiac neighborhoods, the Dairy Queen on the right that closed late fall… The flower shop and run-down funeral home before finally getting to Woodward Ave and downtown Pontiac. Right on Woodward, South past the Amtrak station that was torn down this fall and now shares a portable building with Greyhound Busses. About every other night there’s a train sitting empty, but not tonight. South on Woodward from Pontiac is a downhill run so it’s easy for the speedometer to get out of hand. No police in sight – ever. Nothing to worry about. Pass McDonald’s and a soul food restaurant which I’m guessing is phenomenal, although sketchy from the looks of the exterior. St. Joseph Mercy Hospital is on the right.
13 minutes door-to-door. Much progress has been made on the new surgical wing St. Joes’ has been adding but the frontage is still a construction mess. Turn right into the front entrance and left into the parking garage. When Kelley was pregnant with Lindsey, this was $2 every entry. Thankfully, parking is now free and I proceed directly to level 3 without even hesitating to see if free spaces exist on 1 or 2. I have my spot. It’s always open and I always grab it. I pull the SUV into the wider than most “compact car” space right next to the elevator and head in. (Don’t you judge me… I’ll show you copies of bills! I’ll park where I please!!!). Elevator down to 1 and head through the atrium outside the chapel. Down the hall and turn right past security. The halls are off white with a southwestern clay sort of orange-brown accent on picture frames and artwork. Everything is spotless and painfully neutral. The sign ahead says straight ahead to the “D” elevators but I turn right knowing it’s 4 steps shorter and less crowded. Quick left and the “D” elevators are dead ahead. There are only 2 sets of elevators that go to the 5th floor. The “F” elevators are for staff only during the construction and “D” for visitors and baby mamas and baby daddies.
Exit the elevators on 5 and we’re greeted by any number of receptionists who all know us and either wave or just go back about their business while other visitors are required to sign in. Unfortunately, we are regulars and never questioned. To the left is Labor and Delivery and Lord knows we’ve spent weeks in there. Tonight however, we’re turning right toward the general waiting room which is usually filled with the smell of fast food and anxious looking people waiting for official word that they’ve become grandparents, uncles, cousins or similar. Turn left at the waiting room and keep heading down the hall to the end. Left here and we’ve entered the NICU reception area. A peaceful, quiet waiting room which is rarely busy and filled with lockers for parents and visitors. The waiting room is filled with magazines from our personal collection – identifiable by both subject (Sailing, Rachel Ray, People) and my wife’s penchant for ripping the address labels off the covers.
We pick up the baby bat-phone and a familiar voice answers. “It’s Steve to see Lily.” “OK, no problem, do you need a key” the voice on the phone answers. “Indeed.” Wait :30 seconds and a smiling face appears with a locker key with a giant clear plastic number tag on it preventing easy theft. We’ll hang our stuff up, turn off the LCD TV on the wall (which only receives 1 HD station – NBC) if nobody’s in there to watch it and head in. Through the first door on the left is a fantastically cool device. The bank-teller vacuum tube transport system that sends blood and meds back and forth from the lab to the NICU. To the right is where we’re headed to scrub in and gown up. Foot pedals operate the sink and we unwrap a surgical sponge with plastic brush on one side. Hands clean we grab a gown out of the little closet opposite the sink. I know to look for and older, green shade rather than the newer bright yellow gowns and they truly are “one size fits none.” The greener ones are older and looser around the wrists. Wiggle into the gown, backside open and we’re done.
Dressed, ready and clean we head out and into the first, small room of the NICU where Lily has lived since birth. There are spaces for 4 babies plus an even smaller observation room our first daughter Lindsey actually spent time in when she was born. Lily is in the back right corner of the front room and immediately upon seeing her crib – our eyes dart first to the face of the nurse providing care that day… Then to Lily’s crib… Immediately then to the monitor above her displaying her vitals. All is well… The world seems… Perfect.
This routine has been repeated – sometimes multiple times a day – for One Hundred and Eleven Days as of today. One Hundred and Eleven. Even though tonight’s routine will be the same as the 110 before it… This day stands different from the rest, as today is Lily’s due-date birthday. February 18th, 2009. A Valentine’s Day baby - born on Halloween. Angel’s Night actually as the nurses call it.
Lily is just over 5 lbs. now and has been ordered to take every feeding by bottle. Eight a day. She did well with this order for 24 hours, then petered out and started taking only half then falling asleep. Such a good sleeper she is. We’ve been told that when she takes all of every bottle for 48 hours the time will be neigh to kick her out into the big blue world and home with us. So the joy is the staff is discussing our NICU end-game. The mere DISCUSSION of sending her home is beautiful. She is not rushing however, as is typical of my micro-preemie daughter. The eye doctor saw her again today and once more the report is “better. We’ll check again next week.” Good. There is a chance we may do our “overnight stay” at the hospital with her this Friday the 20th. They will provide a room on the 5th floor for us, hand us Lily and wish us well to get through the night unassisted. Yet another checklist item crossed off before Lily’s discharge. Her car seat sits next to her crib waiting for the day Nurses think she’s stable enough to Pass the 1 hour-no-DESAT period out of her bed and in the seat. They don’t want her to fail it so they’re waiting for just the right time. And so you see – we’re so close – but the waiting is still torture.
The room of babies Lily is in is growing up fast. Raymond has gone home and now there are 3. All on cannula and both eating much better than Lily currently. We are on the verge of having cleared the NICU fully two times since she was born. This is a frustrating point of fact. A point of fact however that Lily seems to care little about. We can now pick her up and snuggle with her at will. She’s snuggly, squeaky and happy. Smiles often and grabs your finger and face-bits if close enough. In these ways she seems more developed than a baby born at 24 weeks and yet we’re still there. She speaks in raspberries and blurbs and is generally pleased with herself as she sips her meals and drifts off to sleep. She is supremely sweet. Incredibly big compared to birth weight. Her head is much less “toaster-like” and is nicely rounded out from the months laying on her side intubated. She’s on ¼ liter oxygen flow per hour – working her way toward 1/8th liter per hour. She rarely DESATS on ¼ liter so you can mess with her quite a bit now before irritating her to the point of monitors blaring. Her voice has not fully come in. There is a baby in the room next to us that when cries – sounds terribly like that of a horrible catfight in which one of the participants will certainly die before it’s done. So though we’re thankful our baby is a quiet, happy one – we’re still also slightly concerned that she hasn’t found her full voice yet.
When the slightest thing changes in the NICU we can feel it without even seeing what it is. There have been subtle and not so subtle changes in the space our baby calls home. One corner is empty. Several familiar and loved nursing faces are on extended break and so we meet new ones. The overall census is down in the NICU so there is a more relaxed vibe overall when we visit. Giraffe beds (incubators) have been replaced with plastic and metal cribs. Nurses now can juggle 3 kids at once since all are “growers” as we say in the NICU business!
We are so close to bringing her home. So very, very close. And we are so ready. The house is ready. Her drawers are filled with tiny clothes, bottles, diapers and lotions. Room is painted, blinds are up, furniture delivered, car seat, stroller and high chair assembled. We are ready for this baby to come home. If we got the call today we could be fully “babyoperational” in minutes.
I hope to not write again until she comes home. I pray nothing significant happens in Lily’s world that is blog worthy. And now I have jinxed it. I have ruined everything for even thinking it… Early in Kelley’s pregnancy – in the fall, I would merely THINK about working on our boat to get it ready for winter and something maddening would happen with Kelley and baby. I’m not kidding. If I even spoke of taking it to get winterized, Kelley would wake up in the middle of the night and we’d be on our way to the hospital. Finally one morning, I snuck out of bed early – told no one, hitched up the boat and as fast as I could drive dropped it off at the marina and rushed back home under the cover of secrecy. We were lucky that day… But I’m telling you… I have now become completely superstitious because of it. All that being said - I’m leaving it in…
If you’ve stuck with this post this far, I thank you again for following Lily’s story. She is an amazing baby and in my opinion worth every bit of the hubbub that surrounds her. But I’m biased, I know. Thank you to all who continue to support us and Lily for so many days.
“There is nothing love cannot face;
there is no limit to its faith,
its hope, and endurance.
In a word, there are three things
that last forever: faith, hope, and love;
but the greatest of them all is love.”
Happy Due-Date, Lily Beck. I love you. One Hundred and Eleven days old. Amazing.
Lindsey's first Snuggle With Sister
Rare Pic - NO TUBES during tubby
What the discerning baby is wearing in 2009
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Posted by Stephen Beck | Comments: (12) | Permalink
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100'S DAY
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Feb 09, 2009 02:50pm (EST)
Long overdue update!
Lily B weighs 4.97lbs as of this morning and is taking 3 feeds a day via bottle. Sometimes she finishes them herself and sometimes she eats some by bottle and needs to be tube fed the rest. She keeps gaining weight steadily and these are all very good things. She has passed 2 eye inspections with a “same or better” report and so we head into this week wondering if her vision will improve or if we’ll have to make a last minute trip to either Beaumont or Children’s. Ohhhh, we pray this move isn’t necessary. The likelihood that we could transfer her back to St. Joe’s after surgery is slim as they say she’s too close to going home to justify the expense of sending her back. Children’s might kick her out, but Beaumont would want to keep her for sure.
Yes, I said “close” to coming home… But we’re still not getting any general idea other than possibly mid-March. And so we continue to hope, pray and visit daily & nightly. We’re learning more and more about the number of meds she’ll come home on along with monitors and most likely oxygen bottles etc. as she’ll probably not be off the cannula before being released to the homefront.
She’s also out of her isolette and in a crib. (Have I mentioned this already? Can’t remember). This is excellent as we now have access to grab the squirt and snuggle with her pretty much whenever we’re there. Good stuff.
The visitation schedule and home routine remain the same. We discovered the hard way this weekend that Lindsey is officially and completely sick and tired of going to the hospital. She’s always been great while there, but now just fidgets and generally makes her displeasure known in any number of annoying ways. Who can blame her? We’re sick of it too. She’s 6 and been awesome through all this. We’ve asked a lot of her patience and she has not disappointed. She’s just getting tired of it. Lily is making progress but there’s less and less dramatic change happening each week and so it’s literally like watching a person grow and put on weight every day. So now things just seem to be draaaaaagging. She’s chunky enough to come home we’re told, but still not feeding well enough. The routine is wearing on us all and I fear if given 7 seconds to string together in silence, we’ll collapse and never get back up. Spirits are always bright when we’re with Lily though and somehow that’s enough to keep us getting up in the morning. There is much to be thankful for… Lily is sweet… and chubby.
We celebrated her centennial on Saturday the 7th! She was 100 days old! Mom bought cookies and frosting and Lindsey and I decorated them with little “Lily’s and 100’s” on Saturday to take to the nurses… We have discovered that goodies for nurses = happy nurses! …And we like happy nurses. I can’t believe when you say “100” that it equals the number of days we’ve been traveling back and forth to hospitals. This isn’t counting the weeks prior – visiting Kelley on bedrest. Seems like a year or more.
Signing off for now…
Steve, Kelley, Lindsey and Lily B.
Post-Tubby Clean Baby
Wet Head
Lindsey Dresses Lily after Tubby
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Posted by Stephen Beck | Comments: (9) | Permalink
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REST YOUR WINGS... 'TILL THE MORNING LIGHT...
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Jan 22, 2009 08:18pm (EST)
Greetings, friends…
Been a frustrating week and a half-ish for us. Lily is once again on CPAP and the ventilator is assisting her breathing. The machine is back. Her breath-per-minute rate on canula was incredibly fast. Almost like a dog’s panting. We think she just got tired out and was having difficulty maintaining sats above 80. She’s doing well on CPAP and seems more restful and relaxed, although she hates the nose attachment that comes with it. We are disappointed that she’s had this setback, but it does seem for the better – for now. They’ll try taking her off the machine again in a few days we’re told. We shall see.
The second issue we’ve become aware of is Lily’s sight. An Ophthalmologist has been seeing her regularly and monitoring her eye development. No surprise, but the diagnosis is always “premature eyes”. Typical of babies born at 24 weeks. Problem is, they’re not getting much better and there is talk this week of surgery on her eyes to prevent detached retinas which would lead to blindness. The surgery would not be done at St. Joe’s so another transfer would be required. Either Children’s again in Detroit or Beaumont in Royal Oak. The eye doctor will see her again early next week and start watching her very closely as her age is at a go/no go point for eye development issues. We know very little about this as Dr’s have been scarce lately and the nurse rotation has been obscure. Our usual round of nurses that have been taking care of Lily are moving around and we’re getting acquainted with new faces. All well and good, but it has just been so much easier getting information from our extended family of nurses that regularly rotate in and out of Lily’s care. All we know, is that if the decision to do surgery is made, things will happen very quickly without much time to think or make arrangements. She’ll be transported ASAP and when settled, have the surgery – and back to St. Joe’s from what I’m told.
I wish “no news is good news” applied to the last 2 weeks, but I’m afraid it doesn’t in our case. I do need to tell you however, that through all this, she’s still very sweet. Very cute. Very wiggly. And very awe-inspiring as always. She’s wearing clothes now and is 3lbs. 10oz. as of today. It is also her 12 week birthday. Our visits are good and the early/late shift plan is still working for the most part for Kelley and me. We haven’t been able to hold her much due to the ventilator setback but I’m hopeful our snuggle sessions can start up again soon.
Life has seemed rather cruel however lately as we learned last night that Lily’s great Grandfather (Kelley’s father’s dad) passed away yesterday in Florida. He’ll make the trip back to Michigan for services soon and it will be good to see the extended family all in one place again… Albeit for an extremely sad occasion. We’ll pray for Leonard… and Marge whom he left behind.
Every day since Lily's been born, I've sung (sometimes a duet with Lindsey) this song to her... Substituting "Lullabee" with "Lily B"... Thought I'd share...
Lullabee, lullabee
Honey bees in the tree
Rest your wings 'til the morning light
Lullabee, lullabee
Honey bees in the tree
Your honey is safe tonight
Just dream to the tune I am singing
Time to stop all that buzzing and stinging
Lullabee, lullabee
Honey bees in the tree
All I want is a smackerel or two...(or three)
Dont' sleep lightly, sleep very tightly
Happy slumbers to you
Until next time… Love you all…
Steve, Kelley, Lindsey and Lily B.
Sleeping on Canula
This is my SERIOUS face
Pooh's LullaBEEs for LilyBean
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Posted by Stephen Beck | Comments: (7) | Permalink
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10 WEEKS, 4 DAYS AND 3+ LBS. (3 VERY GOOD THINGS!)
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Jan 11, 2009 11:51pm (EST)
Greetings to all this Sunday night/Monday morning. I fear available time to write has dwindled down to zero. We survived our first week without “outside assistance” for the first work-week since before Lily was born. We had an excellent Christmas break and amazing New Year’s Eve. Kelley’s parents stayed home this week and we move forward trying to figure out how the rest of the NICU phase of our lives will go. We did pretty well week 1! The routine is grueling however and is as follows:
Wake. Get to school/work. Perform work/school activities. Collect 1st grader. Consume quick dinner together. Parent 1 (exactly who parent 1 and 2 are varies during the week) gets up from the dinner table and leaves for the hospital. Parent 2 cleans up from dinner, processes 1st grader’s homework, tub and bedtime. Parent 1 visits and returns home around 9:15pm. Parent 2 immediately departs for hospital while Parent 1 finishes any outstanding chores in preparation for the next day. Parent 2 returns home around 11:30pm and crashes. Repeat.
So that’s us. Here’s Lily:
She’s cute. Very cute. She is 3lbs. plus some extra chins in weight. She’s filling out and eating really well (still through a tube) but she’s always tolerated her meals very well. She is still relatively silent but has an incredibly cute sneeze. Reports are she wails (it’s tiny) rarely. We still have yet to hear a good holler. Her grip on my finger is incredibly strong when she wants it to be. Otherwise it’s like a feather. She fidgets often and loves her pacifier. Overall she is doing exactly what she needs to be doing. Thing is – when I wrote a few weeks back “slow and steady”… I had no idea how slow “slow” is. We are extremely happy for 2 of Lily’s baby-neighbors in the NICU! Both are off CPAP and her girlfriend next door is even bottle feeding and will go home in a week or two. The boy across the room is off CPAP and on nasal cannula. Both were born give or take a week or so the same time Lily was. Now this is excellent news!!! It is, however, impossible not to be frustrated that our little girl is nowhere near ready to come home. OK, so they haven’t had heart surgery and the little boy avoided the whole staph and pneumonia issue and neither one of them ballooned up, turned septic, lost all their color and…
We know all this. But it’s still frustrating. We can be frustrated can’t we? It’s not wrong, or mean or rude – and if it is – I can’t change it. You gotta give me something… So I’m going with frustrated. Look: I know her due date isn’t until February 18th. I get that. Right. She’s a miracle. I get that too. She’s been incredibly sick: Check. Surgery: Yep. Still can’t breathe on her own: OK, fine. But I. WANT. THAT. BABY. HOME.
NOW!
…And yet. We’re rushing things… And Lily won’t be rushed. I know how lucky we are. We know what Lily has been through and the fight she’s given so far. (OK, HIPPA be damned… These babies have names) I know how lucky Alena is. I know how lucky Raymond is. Raymond was born a twin. But the unthinkable occurred at birth and his sister didn’t make it to the NICU with him. Raymond’s parents are inspiring. Truly. They are awesome. These babies are awesome. Alena’s parents are amazing as well. Their intense vigils and work routine are worn on their faces in the form of utter and complete exhaustion – like we all do. But Lily will not be rushed. We are not in control. Of any of this. And that’s really the part we hate.
New Year’s Eve. A quiet night at home with Kelley and Lindsey. Take-out from The Tomato Kitchen and a peaceful night at home. Lindsey and I got to some arts-and-crafts and made up some party hats! Matching for the sisters! Just before 11pm we headed to the NICU to pass midnight with Lily. The night was amazing. Peaceful. Quiet. Friendly faces of the nursing staff we know and love. Sparkling Apple Cider toasts and hugs at midnight. We got to take turns holding Lily into the New Year and all-in-all will remain the most memorable New Year’s Eve ever.
So as of tonight, Lily’s good. Quite good despite my pining in previous paragraphs. They reduced her backup breath rate slowly last week to below 20 but the oxygen mix is still in the 60’s. Her double chin is a thing of beauty and she has what appears to be butt cheeks! They are the tiniest butt cheeks on earth, but cheeks none the less! Today was an incredibly brilliant visit as all 4 of us were allowed to just hang out and be together for around 2 hours. The NICU was unusually absent of visitors so we all were just… Together. Read books, changed diapers, pinched and poked (no holding though… boo). Lindsey was wonderfully patient and enjoyed watching all the nurse-processes that went on while we were there. There’s no grossing this kid out after today!
I’m honestly not sure if I’ll have time to write more than once a week so I’m going to stick this tidbit at the end of this entry since I’ve been meaning to work it in as party of Lily’s back-story and up until now haven’t found a way to do it. Today – the topic was pushed to the forefront of my mind as we had a Baptism Sunday service in which every member of the congregation was able to renew their baptismal vows. Since we’ve started attending our new church, it seems (and I’m probably just over aware) there have been more than the usual number of baptisms. As it is, I sit in the church pew and fight back tears. 1 hour of quiet in a time in my life where there is NO quiet and your thoughts can really catch up to you. Now add a cute baby in a christening gown to the picture and it’s just not fair to our frail nerves… But this time every week is a very good thing. Lindsey’s baptism was as picture perfect as it could have been. Our lifelong family friend – turned – minister of the church we attended officiated the process and introduced her to the congregation as I’ve seen done so many times before. It was beyond perfect from a ceremonial perspective – and incredibly meaningful as well. Kelley and I had discussed what to do about Lily when she was born often regarding baptism. Should we inconvenience Kirk and ask him to come from his new church far away? Should we ask our new pastors? We hardly knew them. What is protocol? Did we have time? What’s appropriate? We knew none of these things. We knew we wanted it done, but just not sure how with Lily in such an uncertain state. We were still undecided the morning of October 12th when once again, Lily reminded us that she was to dictate the flow of her life. That morning, we rushed to her bedside – that story has been told in earlier entries. What was omitted from the first entry regarding that day was that Lily was baptized that morning. Not how we expected. Not like we wanted. But she is God’s child that we’re lucky enough to borrow - and we wanted to make sure it was done. Quietly in the middle of the chaos of the morning we asked our nurse if there was a chaplain available. One arrived shortly after 9am. It was awkward… Quick and quiet. It wasn’t how we wanted it to be, but not much about Lily has been. Even still… For about a minute, the room stopped. Silent. Dr’s and nurses feverishly trying to save Lily paused and backed away. We gathered round her isolette with tears streaming down our faces... and she was baptized. In the name of the Father, the Son and the Holy Ghost.
3 very good things.
Amen.
Lily's Party Hat
Kelley NYE Snuggle
Daddy and Lindsey Snuggle
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Posted by Stephen Beck | Comments: (9) | Permalink
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HAPPY NEW YEAR!
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Dec 31, 2008 07:12pm (EST)
It has been too long since our last post, and for this, I apologize. It's New Years Eve and Kelley, Lindsey and I are enjoying a quiet evening at home as we get ready to head to the NICU around 11pm-ish to ring in the new year quiet as mice with Lily, the St. Joe's nurses and baby-neighbor families.
Much has happened since the last post, but the current Lily-status is more "slow" than "steady" lately. She is still on the CPAP attachment to the ventilator and has been doing fairly well. Very slow progress though. She is often "floaty"... De-sat-ing often but nurses can usually find her happy place relatively quickly. Sometimes it takes a good deal of suctioning and wiggling, but she eventually gets settled in.
We STILL have not heard her VOICE yet! When she's upset she makes crying faces and even manufactures the cutest tiny tears but no WAIL comes from her mouth yet. She's given us a few squeaks, but still relatively silent. She is quite reactive to our voices when we arrive to visit daily. She gives great finger squeezes too and is always wiggly. On days she's happy and if the NICU isn't very busy we get to sit and hold her! I was the last one to get to snuggle with her and 40 minutes flew by like seconds! I was in total disbelief when the nurse said we'd better put her away and I was informed that almost 3 quarters of an hour had passed... Time just flies... Amazing.
Our house is a complete mess. Both from signs of a great Christmas break and because Lily's room is in full construction mode! The painting is 90% complete and has bright white trim and "LilyBeanGreen" walls! I think it's the cutest thing ever! Uncle Robbie helped me today with the paint and a Home Depot run for the trim and we'll install it tomorrow and be nearly done in only 2 days!
2008 has been both difficult and exciting as we have lost several dear friends (I've attended more funerals this year than any in my life history), Lily arrived, although NOT the way we'd have liked and the world economy is hitting closer to home than ever before. Through the ups and downs however... good friends have become even better ones and our family has rallied around us and helped support us more than we ever thought possible. We have found a new church home that has become a wonderful place of love and support. We have also been blessed by a neighborhood that has risen up to support and help us in some of the most challenging times in our lives. Even in these difficult financial times, both of our places of employment and co-workers have shown incredible generosity as well. We very nearly lost our daughter this year and through her fight I've seen this incredibly small person change untold numbers of lives, not just our own, for the better. As a family member recently told me... We have been blessed to be able to watch an ACTUAL MIRACLE unfold before our eyes every day.
Thank you to all our family and friends that have helped us get through 2008. We are forever grateful. Squeeze your kids and those around you that you love. We're thinking of you all tonight. We couldn't do this without you.
Wishing you all the best is 2009.
Thank you all,
Steve, Kelley, Lindsey and Lily B.
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Posted by Stephen Beck | Comments: (6) | Permalink
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I THOUGHT I COULD, I THOUGHT I COULD!
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Dec 22, 2008 07:53pm (EST)
Today the phone rang at work and it was Kelley. Kelley was in the best mood I have heard her in in a very, very long time. Today - December 22nd, 2008 - Lily's Dr's and nurses pulled her breathing tube out and attached the CPAP to her tiny little head.
She breathes! Since today at 12:30pm - my baby BREATHES!
...And get this! It doesn't stop there... I HELD MY BABY!!! Not in my hands... IN MY ARMS! I held my baby in my arms!!! Kelley too! Both of us! We picked her up - and held her tiny little body!!! Can you believe it!!!???
I haven't had time to transfer pictures from the camera yet, but it'll happen soon... Just needed to take 2 minutes and enter this most BEAUTIFUL occasion in the log book for good.
Her bood gasses have been good so far... Great, in fact. I just can't believe it. We'll check again tonight around 11pm and see how she did for the day.
My baby is SuperBaby!
No voice yet. Some squeaks, but nothing you can call a cry or voice. Suffice it to say that if and when she's able... She will have MUCH to say about this CPAP device. She is NOT a fan! My baby is quite outraged by the attachment in her nose and if she could speak...
Not good. Not at all!
She can settle herself to sleep quickly though and doesn't mind it then. Her profile makes her look like a little piggy. A very cute piggy!
We're off now to be happy. Feels good. Very, very good!
Love to all,
Steve, Kelley, Lindsey and Lily B.
Little Engine
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Posted by Stephen Beck | Comments: (20) | Permalink
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