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LILY'S JOURNAL
Stephen Beck |
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ON TO PLAN "B"REATHE...
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Dec 18, 2008 01:23pm (EST)
Thursday, December 18th. Today Lily is 7 weeks old. Hip-hip Pooh-ray! Today was/is a significant day as “the plan” mentioned in the last entry was to be carried out after rounds at St. Joe’s. After rounds her breathing tube was to be removed and fitted with a CPAP attachment which would plug up her little nose and help her breathe.
This morning around 3am she wiggled her breathing tube out on her own so they tried putting her on the CPAP machine. She fought and she fought… Struggling through 4 hours with no breathing tube. Her blood gasses were extremely poor and by 7am the St. Joe’s staff decided it was back to the ventilator. She is exhausted however her blood gases are back to normal. She was just working too hard to hold on.
Even though I KNEW it would not work the first time, my heart still suffered another broken notch at the news this morning. All rational thoughts had me believing it was too soon and she was still too small, but every fiber in my being was hoping I would be wrong. Somewhere, somehow, someone that was not Kelley or I may have heard her little voice in the time the tube was out. I’m disappointed we didn’t get a call last night informing us of the news, but I’m certain we’d have been of no help to the staff whose care she is in, and certain they needed to stick to business without us hovering.
…And so we move forward. We fear now that Dr’s will re-open the steroid discussion and force us to make a decision we do not want to make. Unsure of the strategy now that she’s told us “too soon!” We will ask tonight as soon as we can get to her bedside after work. Luckily the office is extremely busy today so the mind is occupied with holiday party cheer and new account proposals. A wicked storm is forecast for tonight so as soon as possible, we’ll put the 4 wheel drive to work and get to Pontiac to get the latest update first hand.
Last evening Kelley and I had a great visit with Lily. We are getting to know her Baby-Neighbors quite well and look forward to seeing them as well as Lily. Baby-Neighbor and Lily are joined at the hip and Friday she’s scheduled to give the CPAP machine a try. Little prayers for little lungs off Lily’s port-side rail are being sent out tonight. There was a motivational recitation of “The Little Engine that Could” by Kelley in hopes that the message continues to sink in! The book, coincidentally my favorite as a child, is a gift from a dear friend of ours who is responsible for introducing Kelley to her O.B… which led us to the high risk pregnancy specialist that kept Lily in Mom’s tummy for the critical 24 weeks and 600 grams… That then introduced us to the NICU Dr’s at St. Joe’s that led us to Children’s hospital for her heart surgery… That led us back to St. Joe’s and got us 7 of the most incredible weeks of our lives with Lily. Goes to show… You never know the impact you can make on another person’s life!
I’ve run-on too long again and so I’ll bid you all adieu. The notebook at the house which contains the list of names we need to get thank-you cards’ to has grown to an incredible volume of individuals! We keep looking for the time to write a card or a note and that time somehow never materializes. For now: THANK YOU, to all who are continuing to follow Lily’s story and for all who helped us before she was even born with meals, hugs and prayers.
You are all so appreciated. You can’t possibly know.
Love to all,
Steve, Kelley, Lindsey and Lily B.
Home
Little Hand
The Little Engine That Could
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Posted by Stephen Beck | Comments: (16) | Permalink
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THERE IS A PLAN!
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Dec 14, 2008 08:13pm (EST)
Hello from Pontiac! (HaHa!)
Sunday, December 14th. Six weeks and 3 days old. Lily is doing well. 2lbs. 3oz.! She’s creeping up on double her birth weight! Today, Kelley was able to bathe her and I got my first chance to feel how light and wiggly 2lbs. can be when held in your hands! I lifted her up as her bedding was changed beneath her and HA!!! I almost put her in my pocket and stole off with her… Any number of 10,000 alarms would have sounded, however and I thought better of it… But one day… ONE DAY! I’m gonna get that baby OUTTA THERE!!!
BabyNews is as follows: PICC line (semi-permanent, whopper of an I.V. line) is out! She now only gets I.V.’s for Platelets, etc. Platelets have been low over the last few days but today levels were just under 100 (thousand) so they did not have to give her any today. Another culture is (not) growing after 24 hours so we are hopeful the platelet drop is not from additional infections. We speculate that when little babies are given multiple rounds of blood products, etc. that their bodies simply think they don’t have to produce them – since they are replenished so freely by nurses when fighting infections, etc. May just take time for her body to realize we are not going to continue to do “everything” for her. We shall expect the minimum… Breathe. Pulse. Grow. Be cute. Etc… But when she’s finally sprung from babyjail – we will spoil her in every way possible!
Dr’s have been thinking a round of steroids possibly. These would help Lily wean from the ventilator more quickly studies show. We know two things about the ventilator: 1) it is saving her life. 2) it is (potentially) hurting her lung development over time being on it. Priority #1 is growing that baby and getting her of the vent as soon as she’s ready. The steroids would be an 8 day course. There are possible short term and long term side effects… None of which are any good at all. In fact, we are struggling to decide if we would sign consent if we are asked. Fortunately we are not there yet. The big news is THERE IS A PLAN for the week. Wean her down to 20 breaths / minute from the machine and if she continues to have good blood gasses – remover her breathing tube and try the CPAP phase. She’ll be connected to the same vent machine but there will be 2 tubes in her nostrils that will puff air when she needs it and no tube down her throat. She may go from CPAP to vent back to CPAP and back for a while. But this is a huge effort and greatly significant milestone in her preemie development. Babies almost never “like” these and nurses aren’t crazy about it either, but it’s the “tween” phase before breathing on her own. If this works… And if we’re lucky enough to be visiting when they’re trying this… We may finally get to hear her little VOICE! Imagine having a baby and not hearing her make a peep for over 6 weeks! It’s just not babylike! We would also be allowed to HOLD her for short periods. …But I feel I’m getting dangerously ahead of myself… So I’ll move on.
Lindsey visited twice this weekend. Lily got read to twice. “Today I Feel Silly” on Saturday and “Goodnight Moon” on Sunday. Cutest moments ever. EVER! One little voice reading to another. Priceless. Last weekend Lindsey had one of her “best-ies” over for a playdate. I was upstairs and I heard the fantastic chatter of two girls laughing, playing and singing the most ridiculous songs. I could not help but think of the hopeful future that will bring that welcome noise into our lives on a daily basis. Of course – the girl’s “best-ies” will always be welcome too!
Counting down to Christmas Vacation! This has been a most memorable holiday season already. Troubled world outside the confines of the NICU. We were in a thoughtful place when Lindsey was born. A freshly post 9/11 world - and at war. Lily is a ‘war baby’ as well I suppose. We just so wish for peace in these times of economic trouble and a world at war. Our babies deserve better than the world is offering them right now. The nightly news, the auto industry, and the issues surrounding the closing of Lindsey’s school “Pine Lake Elementary” do to fiscal restructuring are weighing heavy on our hearts. We are fortunate to have Lily with us. The few hours time allows us to spend with her are so peaceful when she is doing well. None of those stresses are present when at her bedside. There’s just no time for it. Lindsey and I think the world needs to get over it. Play ring around the rosy. Make a snow angel. Laugh loud and long until it hurts. Sing silly songs. Greet people with a hug not a handshake. Do your best in school. Be nice to your friends and share your stuff.
Thank you all again for following Lily’s story.
Love to you all,
Steve, Kelley, Lindsey and Lily “LilyBean” B.
Pudge Reads - Today I Feel Silly
Kelley Bathes Lily for the First Time
Dad Holds Lily for the First Time
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Posted by Stephen Beck | Comments: (10) | Permalink
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HANGING OUT AT LILY’S CRIB
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Dec 09, 2008 03:03pm (EST)
The short and sweet of it, is that Lily is doing pretty stinkin’ well for all she’s been through in her short life! Continuing on the slow and steady theme, that’s exactly where we are. 1 major piece of news to report is that she is now tipping the scales at a whopping 2lbs! What a chub! You wouldn’t know it by looking at her as she’s still thin as a rail except for her tummy which is Pooh Bear round.
The folks at St. Joes are aggressively weaning her off the ventilator as frequently as possible. Reports today is that the oxygen level is set to 50% and the number of breaths the machine provides has been set even lower today. Monitors read that she’s getting several of her own breaths in a minute, so we’re slooooowly encouraged that the process of learning to – and being strong enough to – breath is moving forward. Emphasis = slooooowly.
We are monitoring a blood culture which is now nearly 2 full days old and still reading “nothing” – which is exactly what we want. Her Hematocrit (http://en.wikipedia.org/wiki/Hematocrit) level went up and Platelet (http://en.wikipedia.org/wiki/Platelet) level went down suddenly a few days ago both which presented themselves during the worst of the infections she was fighting. All seems well however, and could simply be a function of being so premature. Watchful eyes are on her however, but levels are normal now after getting another blood transfusion and platelets.
In fun-baby news, Lily got a tubby last night and a new bed/condo. Kell and I were there to watch all this happen. Quite a process. The bath just whooped her out. She tolerated all the jiggling and suds extremely well but went right to sleep as soon as she was in her new bed and left alone. Nothing like a shower and fresh sheets on the bed! In Lily’s case it was a sponge bath with baby wash and a new isolette (incubator bed).
Somehow the house got decorated for Christmas this past weekend in between Lindsey’s social schedule and Lily visits. Quite amazing that we essentially got everything up and lit. Lily’s got a sweet Christmas blanket covering her condo now and we’ll start up the arts and crafts to decorate her dwelling soon for sure!
Thank you all for continuing to follow Lily’s story, wishing her well and praying for her.
We love you all.
Steve, Kelley, Lindsey and Lily B.
Kelley, Nurse Kellie and the bath
New Condo - before wires, gadgets and Lily
Lily's 1st Hat
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Posted by Stephen Beck | Comments: (5) | Permalink
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SLOW AND STEADY WINS THE RACE...
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Dec 04, 2008 09:19pm (EST)
It's been a few days, so I wanted to post a quick note to say that all is well. She is a hefty 1lb. 15oz. - just shy of 2lbs. Her "med tree" as I call it (I.V. pole) has been reduced over time from 5 bags to one. Normal Saline. She is now getting 2/3 of her fluids via b. milk and she's keeping it down extremely well. Her ventilator settings are continually reduced.
Some days she tolerates us poking at her... Rubbing her back, etc. and some days she doesn't. She lets us know. Tonight was a no-touch night. Boo. She had a massive poo-filled diaper however which I got great joy in witnessing. The plumbing works! Lily has a baby-neighbor that is very similar in age, is fighting the same pneumonia and staph infection and thus I have dubbed them “The Toxic Twins” and it has stuck now with the nursing staff as well. We all think they have a baby morse-code of sorts. One will make their monitors beep and buzz and the other usually responds within seconds… Buggers! They keep the nurses on their feet entire 12 hour shifts.
Baby-neighbor parents, nurses and respiratory therapists have proven great fun to talk to as the hours tick by in the NICU. Over time it seems we’re slowly crossing from “people who visit baby” to “part of the family.” (The office gossip is always interesting! Haha!) Getting to know the great people who are taking care of my baby has been incredibly enjoyable. There has been a giant-baby boom over the last few days. 8 and 9 lb. lunkers are brought in for observation – stay a bit and are quickly evicted. These babies seem simply gigantic compared to the Toxic Twins who both weigh nearly the same.
So it’s Thursday… Another Birthday! 5 Weeks old! Ahhhhhhh… Feels good. Feels very, very good. Off to bed now, for tomorrow is another day. We hope for quiet, lazy days for Lily. Growing ever stronger…
Slow and steady.
Love to all,
Steve, Kelley, Lindsey and Lily
Big_Hand_-_Small_Baby
Slow_and_Steady___
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Posted by Stephen Beck | Comments: (6) | Permalink
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30 DAYS HATH LILY B.
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Nov 30, 2008 05:15pm (EST)
On October 30th, 2008 as Lily was settling in Dr’s and nurses poured in around her hooking her up to what seemed like hundreds of monitors. Hours passed and I started looking outside of my tunnel vision and slowly became aware of things happening around me. One of the things that struck my attention repeatedly was a colorful sign attached to our baby-neighbor’s isolette that read “Happy 1 month birthday Faith!” Faith is another sweetiepie baby girl who was Lily’s neighbor until she “graduated” into the bigger room adjacent to Lily’s. I had been staring at that sign for weeks until she was moved from our bedside. I would stare at that sign with envy day after day. Wednesday the 12th it didn’t seem as if she’d get a birthday sign of her own. But much has happened since then and today she seems strong.
One month might as well have been a billion light years when you are waiting for seconds to tick by. On one hand, October 30th seems like just yesterday, but as I look at pictures and previous postings on this site, I realize that “yesterday” was a month ago today. My baby girl is one month old!
One month.
Crawling ever so slowly toward her due date of February 18th, 2009.
Today is a great day. It’s snowing like mad outside. Kelley and I visited her this afternoon and it was baby business time! Kelley got to swab the poop deck for the first time ever today! First of hopefully many diaper changes for Lily. After having seen the nurses do it several times, KB was understandably over-delicate with the matter… She has been saying “I just want to change a diaper or something, so I can feel like a mom!” Mission babypoo accomplished. I got to take her temp today and we generally got to putz with her our entire visit. She was wide eyed and expressive until the very end of our visit where it became apparent that we’d wiped her out. Her eyes stayed closed and she drifted off to babysleep. So sweet. Sats are all good and monitors – bleah, bleah, bleah… Did I mention my baby is ONE MONTH OLD TODAY? Well, she is!
We arrived today with a new addition to the decorations on Lily’s little condo. A construction paper sign that said: “Happy One Month Birthday Lily Elizabeth!”
Indeed.
In addition to the birthday note we found one of the nurses had also printed and cut out a paragraph or two that we thought was both sweet and appropriate. Kelley waited to read it until we were ready to leave… And it’s a good thing…
As I love you through the glass
A tiny hand sweeps across the blanket
Reaching out to me
I reach inside to touch you
And you stir slightly;
A tiny breath like a feather caresses my fingers
As I love you through the glass.
One eye opens
Easily staring into mine;
Can you see me?
Can you feel my presence?
As I love you through the glass.
I ache to hold you;
I await the moment
When you peacefully rest in my loving arms
A silent tear rolls down my face;
I slowly turn to walk away
Only to glance back one more time
As I love you through the glass.
-Elena Murphy
Thank you all for reading about and caring for my baby.
We love you all,
Steve, Kelley, Lindsey and Lily B.
Kell_Changes_Lily's_Diaper_for_the_First_Time
Lily_Gets_a_Pacifier
XCU_LilyBean_-_1_Month_Old
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Posted by Stephen Beck | Comments: (10) | Permalink
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ALL IS WELL IN LILYLAND
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Nov 29, 2008 09:49pm (EST)
Saturday night, Thanksgiving weekend and all is quiet in Lilyland. I just got back from my late-night visit and she was showing off for her daddy for sure. Slowly, but steadily she is having her ventilator settings reduced. When I left tonight she was down to 59% oxygen and 48 breaths/minute. 48 is her lowest setting to date. She still has sats in the 90’s and seems to be tolerating the changes well… She has been getting her “feeds” as they say at St. Joes and she has been tolerating them extremely well. They have been slowly increasing the amount she gets each day as well. Lastly, she’s weighing in at a hefty 1lb. 13oz. Even though she’s still micro-preemie small, I’m thinking she actually looks a little bigger now.
She has a tiny pacifier now and will use it now and then. Every now and then she’ll get a finger or thumb in her mouth and she’ll suck on them for a bit. She’s doing baby things!
There are a number of things they’ve scanned for and are watching, but for the most part… She’s just hanging in there hour by hour, day by day. And so…
All is well in Lilyland.
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Posted by Stephen Beck | Comments: (3) | Permalink
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HOME CAN MEAN MANY THINGS...
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Nov 23, 2008 04:43pm (EST)
Tonight, we are home. Lily was transported via “Panda One” from Children’s Hospital downtown back to St. Joseph Mercy in Pontiac. I’m not sure either the spoken or written word can convey how incredibly GOOD it is to have her “home.” She was cheerfully welcomed by friendly faces from Dr’s, Nurses and Staff. It was exactly as I’d hoped it would go. Lily endured the trip much better than her trip downtown and arrived safe and sound around 2pm. She’s back in the same spot she was in when we left and for the first time in 3+ weeks, we seem “whole.” We’ll let the folks at St. Joes get re-acquainted with her over the next couple days and see how she’s progressed through all she has been through. In the time we were there they were already aggressively weaning her off pure oxygen and she was holding steady and strong at ventilator settings Children’s had implemented. Her monitors displayed numbers we hadn’t seen so steady in weeks. Oxygenating in the mid to high 90’s.
I want to share with you all one of the most amazing moments I have ever witnessed. Big sister Lindsey and little sister Lily were finally introduced and I must tell you, it was impossible not to cry at that moment. Lindsey was so “amazed” at peering into Lily’s isolette for the first time… Her face beamed when she looked just past Lily and saw her school picture looking over her sister. She was fascinated with how warm it was inside and kept touching her bedding and talking and singing Whinny the Pooh’s “Lulabee” song to her. (A song I have had in my head for 3 weeks… I call her “Lily-B” and I imagine Pooh singing to Lily-B rather than to snoozing bees). There are pictures on my Flickr site here:
http://www.flickr.com/photos/31936175@N04/sets/72157609881510324
Click “slide show” in the upper right corner to see the pix full-screen if you’re interested.
I’ve also posted some general pictures of our stay at Children’s Hospital. The link to those is here:
http://www.flickr.com/photos/31936175@N04/sets/72157609880777556/
Again, click “slide show” for the full screen images.
And so we approach Thanksgiving weekend with more to be thankful for than time to write or say. Suffice it to say life is good. Life is very, very good. Kelley is downtown as I write this checking out of the Ronald McDonald House and settling up with the “lock nazi” (this is a story unto itself) who doles out lockers at Children’s. The Ronald McDonald house is truly an incredible place. I never thought in a million years myself or any of my family would ever need the services of a place like this, but I must tell you – it was and is an incredible place that provided us security in complete chaos.
One more thing before I go… MY BABY POOPS!!! I never thought I’d be excited about this fact, but our call this morning to see how the night went brought us this news! 3 weeks in the making and she had a blowout! …That’s my girl!!! They started feeding her some b-milk last night and it seemed to be enough to get things moving! She also got a tubby this afternoon at St. Joes which hopefully will settle her in for a nice… Long… Restful… Sleep.
Back HOME… At St. Joes.
God bless all…
Steve, Kelley, Lindsey and Lily B.
Lily_sleeps_like_Lindsey_used_to_do_with_1_arm_up
Lily's_bandage_from_surgery
Sisters_United!
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Posted by Stephen Beck | Comments: (12) | Permalink
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OH, 1 MORE THING...
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Nov 20, 2008 07:52pm (EST)
Happy 3 week birthday, baby!
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Posted by Stephen Beck | Comments: (1) | Permalink
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LIMBO BABY
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Nov 20, 2008 06:00pm (EST)
It's Thursday evening. We've made our nightly run home to spend time with Lindsey and pack a new bag of stuff for our overnight stay downtown. Children’s Hospital has a Ronald McDonald House right next door and we’ve been taking advantage of it. The place is quiet, beautiful and clean. EXTREMELY nice! And 10 bucks a night. Can’t beat it. We come home at night, spend time with Lindsey and after she goes to bed, drive back downtown. Spend a bit of time with Lily and then try to catch some shuteye.
It has been more than 24 hours since her PDA ligation surgery and progress has been slow to say the least. Not bad. Not great. Just steady, I suppose. We’re in this odd baby purgatory where we don’t know when she’ll go “home” to St. Joes or if she’ll have to stay for days, or (gasp) weeks. She de-sated on me once when I was in there today. This has happened many times, but NEVER becomes routine. Her blood oxygenation level drops below a pre-determined point… Usually 75 or 80 (out of 100) and she has to be “bagged”, moved poked or otherwise stimulated quickly to get it back up. We want these numbers in the 90’s which they are sometimes, but not much today. Yesterday in fact one was so bad they had to remove her breathing tube and replace it. Needless to say, this is terrifying to watch happen.
We are hoping tomorrow is a better day, and pray for a quiet night tonight. She peeped her eyes a little bit today but took the majority of 24 hours to start to come out of sedation from surgery. She was very still today and snuggled in bed. She also hated pretty much everything. Light, sound, or touch was met with grave disapproval on the monitors. And so we left her alone as much as possible.
We got out a bit this afternoon and took care of some insurance paperwork (Blue Cross is going to LOVE us…) and actually had a nice lunch at Xochimilco in Mexican village (5 minutes from Children’s). Going to once again get back to work tomorrow. I hope this fate-tempting activity yields another call from my wife that will announce that they’re going to transport Lily to St. Joes. …And nothing worse.
Thanks to the Dr’s, Nurses and Surgeons at Children’s that have taken care of her so far. The surgery was amazingly fast. 30 minutes I’m guessing. They drew lines on her back so she’s a bit marked up, but a small price to pay for a procedure which will hopefully help her grow big and strong… And fast.
A funny note about the NICU at Children’s. Nobody that works there is over 4.7 feet in height. I literally dwarf these people. I am a giant. I’m not kidding! It’s like they don’t want any big scary Dr’s spooking the little babies or something. The patients are small, the Dr’s are small. The nurses are small. The x-ray tech is the smallest of all. She’s very cute, and very tiny. She pushes this massive portable (yeah right) x-ray machine around the floor literally all day. It’s 10 times her size. A female Dr came in today literally half Kelley’s height! …the things you notice when you sit for hours in 1 spot…
OK, tired now… Moving on with the day so that we may reach the end goal… Pillow. Bed. Sleep.
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Posted by Stephen Beck | Comments: (4) | Permalink
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SHE IS OUT!
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Nov 19, 2008 02:46pm (EST)
She is out and doing well! She did great during the operation and she seems comfy and recovering nicely at this point!
Dr's say everything went great!
We'll watch her close for 24hrs so we will hope for the best!
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Posted by Stephen Beck | Comments: (8) | Permalink
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