Tuesday, November 30, 2010

Number of Consecutive Hospital Free Days:


Previous Record: 8.

Lily visited the ER for the first time today. We were only there for about four hours so in the long run it will likely barely register on the Hospital stay radar, but it was our first trip back after NICU discharge, and therefore warrants a picture.
Last night at 2:30 am Lily's oxygen saturation monitor went off. This usually happens once or twice a night if she dips below 90 while having a very restful dream or a really big poop. So at first I didn't even sit up in bed. But it continued to beep past the usual once or twice so I wearily sat up and squinted at it from across the room.
Well that can't be right, it must say 90. Then why is it beeping?
So I got up and went closer to squint at it--yep, 40. Or 35. So I turned on the light. Lily had her eyes open and looked gray, and seemed to be staring right through me. My first reaction was to do what every good nurse does--I smacked her. That did nothing so I called downstairs to Zar who had fallen asleep watching TV again, and said "Something's happening! Turn up her oxygen!" He came running up and together we sat and held Lily and watched the monitor. It dropped down to the low 20's but her heart rate didn't drop below 110. Then her sats gradually came back up. Well having traveled this road before we did not immediately call 911. We didn't turn on every light in the house and rip the kids from their beds and rush to the hospital. We changed her diaper. We said a prayer, we wrapped her up and held her. She seemed totally fine. She looked at us like "What now? Isn't it 2:30 am?" and closed her eyes. So after a few minutes we put her back to bed.
This morning the day started as usual with Ella yelling "MOM! C'MERE!" from her crib. We got downstairs after multiple trips up and down for monitors, pumps, cell phones, kids. All three girls were covered with snot so I did the morning saline snuffing, (much screaming and writhing) and changed diapers, and offered Ella every breakfast choice under the sun from eggys to nutrigrain bar, all of which were scoffed at. Ella collapsed into a puddle of fury, Ava wedged herself between the coffee table and a baby seat and Lily sat quietly in her chair waiting for her morning caffeine. So pretty typical.
At 10:30 I checked on Lily who was sleeping and satting at 97. Ava was asleep in her crib for morning nap. Ella was laying on the couch watching Elmo, having only eaten chocolate milk for breakfast. And so I went to do some dishes.
The monitor went off, which had happened once before this morning and had been remedied by a saline snuff. So I waited for two beeps and then went in to check. Lily was, again, at 40. Well I squeezed her cheeks and yelled her name, and watched her continue to drop to the 20s and turn blue. Then she slowly started coming back up. I grabbed my phone and called Zar, who asked if I thought we should go to the hospital. I said I didn't know. He said "Well, I think we should."
So that's how today ended up to be a Hospital Day. Ella and Ava went to grandmas and I loaded up Lily and her equipment, catching the physical therapist as she arrived to tell her we would have to reschedule. Today was supposed to be Lily's first Therapy Day.
Although I'm feeling long winded, it will suffice to say we had blood drawn, and sputum suctioned, and urine collected and tested, a chest x-ray, and thorough listening to, and everything looked fine. Good, in fact. Her heart looks better on x-ray, her lungs are clear but for a little snot, her blood gas and electrolytes were normal (for her) and we will get final testing for infection back tomorrow. They offered to admit us for observation, but we elected to go home. I figure she's got a cold and this is her delightful way of reacting to it. Charlotte, also a punk, was known to react this way to a little snot now and again. Just never twice in 24 hours. Or 3 times, if you count yesterday when she looked blue while I was putting her in the car and and after a cheek pinch decided it was just the low light.
And so now I'm at home, hardly believing it's already 4:30, watching a baby in a car seat and a monitor reading 100, and feeling somewhat grateful that all 3 girls seem quite exhausted from this bug and are sleeping in warm sweaty bundles. And I'm grateful for the knowledge that someone else is looking out for Lily and knows what's best for her, even if I don't understand, or even disagree.

Saturday, November 27, 2010

Thanksgiving Happenings

Sampling Rosie's binky
Best Seat in the House

Finally home with Jaydon
Thanksgiving weekend was wonderful. We were most grateful that the whole family could be together, including our littlest Lily. Charlotte was definitely with us in spirit and we are so thankful to have her pulling for us on the other side.
We celebrated on Thanksgiving with Zar's family and with mine on Friday when my dad could be home. Buttery potatoes were much enjoyed...twice. Zar was able to take Ella to Tangled on Thursday with her cousins--her first theatre movie, and she did quite well, except she wanted to stand on her chair and scream "DADDY! FROG! YIBBIT!" throughout the whole movie. And I hear it is a chameleon, not a frog. I got up to venture out to Kohls at 3 am, wandered around for an hour, found some boots and a "Elmo Loves the Potty" type book I wanted, took one look at the line, dropped my stuff and walked out. Found nada at Macy's and a couple sweaters (for me) at JP Penney, which I got without waiting in line by buying a nail polish at the salon. Thank goodness it wasn't a total bust, but pretty close. On Friday Zar and I were both able to go see Harry Potter which was awesome. Movies are so much more impressive to me now that they are a rare treat and not a throwaway weekend activity. See? Parenthood rocks.
On Friday night Ava and I were able to sneak away and see some old high school pals I hadn't seen in quite awhile. How funny to be 30 and it's like nothing has changed, although in this particular group I realized I was the only one with a kid...or four. Good ole Utah me.
This morning we posed for family portraits which was much less painful than anticipated, although I have not seen the results yet. Ava cooperated wonderfully, Ella was quite solemn, and Lily snoozed throughout. And of course then the U game which was quite stressful to watch...

but came out right in the end. (go utes!)

Wednesday, November 24, 2010

What we did today.

Ella has been working on towers.
Ava has discovered her little sister.

We have family pictures this weekend. Ella managed to scratch the heck out of her cheek in her sleep. And these are the looks I got out of these two when I asked for a "nice smile." Awesome. Also did I mention I had a baby a few weeks ago? Real happy to be posing for posterity.
Oh well.

Tuesday, November 23, 2010

The Baby Zoo

I don't think we will leave the house today. We are just going to snuggle down and be thankful we are all home to enjoy some pre-thanksgiving laziness.
We are doing great. Never did a mother of three kids age 2 and under sleep so well. Lily sleeps in the cradle in our room with her feeding pump clicking away and her sat monitor glowing from the dresser. Last night I got up once to pump and reposition her, and once when she ran out of food, and that was it. I know every night won't be so peaceful but I'm grateful for the ones that are as cozy as can be.
Today we will try to finally get the laundry put away, do a towel load, change the sheets, stretch out Lily's little hands and do some modified tummy time, read "Go Dog Go" 35 times and "We're Different, We're the Same" 12 times, maybe make banana bread with our black bananas, pump every 3 or 4 hours, have numerous diaper changing stations set up, color, eat lunch, nap, take a bath if we get bored, and generally lay around, all with the endless drone of Mickey Mouse Clubhouse in the background (or foreground.) Doesn't sound half bad.

Sunday, November 21, 2010

HOME...5 weeks old.

What now?
My sisters can't reach me here.
And here we Go!
We are home. I'm not going to write much as i'm holding a dear little bundle in my arm and typing via "hunt and peck." It feels so good--and surreal--to be home. It felt strange to watch another giant tank of oxygen come through our door, to set up another IV pole and push buttons on a kangaroo pump. Thank goodness for the calm and confidence experience brings.
...okay...there have been moments of hysterics. (Lily is now laying across my lap.) The doctors dawdled their way through discharge as always and our early morning departure took until 1 pm. The oxygen delivery guy claimed over the phone we didn't exist. The first feeding set I loaded wouldn't prime and I threw a box of gauze on the floor in frustration. The battery on said pump lasts just long enough to drive to grandmas. Our oximeter is touchy and on the small tank Lily requires 1/16 liter oxygen, on the big tank--1/4th. Already the medication port on the G-tube has popped open and soaked Lily and her car seat. Both Ella and Ava are extremely attracted to tubing and wires...yay. Plus my rule that only one child is allowed to cry at one time was completely ignored. I could feel Charlotte looking down on us and laughing her head off. I wouldn't be surprised if she had a role in the medication port fiasco--that was common trick of hers. So here we go on our newest adventure. Welcome to your earthly home Lily Pie.

Saturday, November 20, 2010

The Big Update

On Wednesday, Lily's One Month Birthday, we got wonderful news. The docs said we could go home--as soon as the weekend! This of course touched off a frenzy of activity to get ready. Mostly it involved getting hooked up with home care and getting various giant boxes delivered to the hospital for us to cart home containing feeding sets, a feeding pump, an IV pole, various swabs and gauze, creams, ointments, tender grips, tubing, an oximeter and a tank. I had to be taught to use all this equipment and generally I don't tell these people I have done this before, and just let them teach me, but then I look very natural and genius like when I demonstrate what I have learned. I also had to go to a 2 hour class on caring for a G-tube. I thought a quick overview would be good, especially since some of the practices have changed somewhat since Charlotte's was placed, but turns out it was unnecessary but required for discharge. I spent the whole thing feeling concerned for the other parents who were scared and clearly didn't really GET it. The teacher was going over pill crushing for example. Fairly basic. I guess you learn by doing. My advice to them was to always check the medication port before doing a bolus feeding. They will learn that one soon enough. I for one LOVE a G-tube and wish all kids had them. I hope Lily's will be as problem free as Charlotte's.
Anyway I also had to buy a car seat for Lily as Ava isn't ready to leave her infant seat, and she needs to do a car seat test to make sure she breaths while in it. I also finally became a mom and last night we picked up our "new" van from it's previous owner, my Sister-in-law. It really is a thing of beauty. It's a 2007 Kia Sedona with automatic doors and leather seats and lots of room and I drove it home last night and adored it. The only issue is the giant "COOKIE CUTTERS HAIRCUTS FOR KIDS" decal across the back window so Zar has his work cut out for him today scraping that off. Turns out my sister-in-law hated it too.
The only thing left is for Zar and I to get taught in infant CPR (again, good to refresh, and REQUIRED) watch the terrible shaken baby video and another video I believe, and as long as Lily stays the course and keeps doing great, we can come home on Sunday!! I am being pressured to "room in" tonight and spend the night in the "family room" with Lily and prove I know how to monitor her and work her pumps and keep her oxygen on. At first I said I would do it, but I think today I will pull out the big guns, reminded them that I have done all this before, and oh yeah, did I not mention I'm an RN? I've kept that one a secret too. We will room in on Sunday night when I can spend my sleep hours in my own cozy king sized bed and not on the pull out plastic couch. Thanks.
I am so excited and happy for Lily to come home. I am ready. I know it's going to be crazy and I have my hands full, as everyone likes to remind me, but how wonderful to not have to trek up to the hospital every day and leave my other kids. And how wonderful to finally get Lily to myself and get to dress her in all her cute clothes and get that hospital smell off of her and work out our new routine. I can't wait to do her daily therapies and stretch out her little hands and work on modified tummy time. I can't wait to watch her grow and get to know her and see what she can do. I can't wait to let her sisters get to know her and learn to keep her safe from their curious little fingers and teach Ella that really, we DON'T SIT on the baby. Thank goodness my Ava is so incredibly strong and is pretty much an even match for Ella already, at 6 months. How I love those girls.
Thank you so much to everyone who sent out a good thought or prayer regarding Lily's oxygen needs. In a matter of days she dropped from 3 liters high flow to 0.10 liters low flow. It really was incredible. Not only that, but WITHOUT oxygen she saturates just fine, the oxygen is just there to help keep her vessels dilated.
Just one more quiet night without the beeps and clicks, but the nice thing about continuous feedings is I will get up once to dump in another bottle of milk and that's about it. Oh yeah and the pumping. Grrr.
So here we go again. I keep thinking of last year when Zar and I went and spent the night at the Romeo and Juliet suite at the Anniversary Inn the night before Thanksgiving. We talked a lot that night and I said "Our goal is to have another baby--somehow--by Thanksgiving next year." And here we are with two new babies and their wonderful big sister. I have so much to be thankful for. We are richly, richly blessed.

PS. Another reason I have put off blogging the past few days is I downloaded a bunch of hours of video onto the computer and now it's running very slowly. I am hoping there is a place online I can store them? Anyone have any hints? This is also why this post has no photo, as it's just taking too long to load. I have to get this figured out before Cyber Monday.

Friday, November 19, 2010

Sorry no updates--so busy! Lily is probably coming home Sunday! Lots of stuff to get ready. I am so excited. Real update soon.

Tuesday, November 16, 2010

So I guess we aren't trying out the G-tube until tomorrow.
Lily is doing great--she graduated from an open warmer to a crib which is one of the criteria for going home, although I liked the open warmer better. Less cage like. And cozy when I would rest my head next to her on the mattress. Her oxygen need continues to go down which is very encouraging.

I'm spending the day at home with Ella and Ava today. It's been fun and cozy and I had a ton of little things to get done I've been neglecting, like emptying the bathroom trash cans and changing the sheets. It feels good to feel caught up and to read Ella the same book 17 times and feed Ava without feeling like I need to shovel it in as fast as I can. It's hard to not be with Lily but I know she's just snoozing away and working on getting better and is in good hands up at PCMC.

Sunday, November 14, 2010

This little Snug a Bug...

just turned 6 months old...

which means we can Finalize her Adoption!
December 16!

Four Weeks!

Brush doze teef!

Mmm Burts Bees...

and a snuggle.

(The goop on her head is from her IV burn 3 weeks ago. It's covered with tegaderm and "Medi-honey.")

Zar and I got to spend a couple hours with Lily together today, which is rare. Usually we are taking turns being with her so it was nice to have some quiet time with just the three of us...and two nurses, three roommates and their parents.
Lily is doing well--a couple more days until we can try the G-tube so it's all about recovery right now. Her oxygen need is a bit lower again today and when awake she is much more alert and less drugged up.
Here's to another NICU week...maybe our last???

Thursday, November 11, 2010

My First Blog Video

Spent a few hours with cute snuggly Lily today, and took this video. This was the only time she was awake other than while getting her diaper changed. She is still on pain meds and quite snoozy. Otherwise doing well, although also needs a bath.

Another echo and chest x-ray tomorrow. One step closer to home.

Wednesday, November 10, 2010

The Little Things

No new pics today. Maybe I shouldn't post this one...oh well.
Here is proof that God is watching out for my sanity. I meant to go to the store yesterday but Lily's surgery took longer than expected. I meant to go today but had such a short time with Lily I didn't want to cut it shorter, or drag Ella and Ava out in the snow. I didn't need much--a weird random list including chocolate syrup, (how I get milk into Ella), bananas, (for spinach smoothies) garbage bags and deodorant. So nothing vital. I got home and took out the stinky trash and realized I was OUT of garbage bags so I started searching for a "PATIENT BELONGINGS" bag to use. Then I got distracted and went to get the mail. And there, was a free sample including (1) Glad tall kitchen trash bag with febreeze and a sample stick of Dove deodorant and a dollar off coupon for both. Thank goodness for the little things that keep us from going over the edge.

Things have been going smoothly and happily for the last 24 hours. Lily is healing well and coming of the vent maybe tonight, we joined "Hope Kids," whose members I have always been somewhat jealous of, my birthday Kindle finally arrived and was registered to Zar's credit card so I promptly bought a couple books on his dime, and we just got a buyer for the Subaru. I like to think that things are going our way and in another week or two Lily will be ready to come home to her sweet little cradle by the side of our bed. I really want her home. For the first while I was afraid of her coming home with all the equipment and care she will require, but I feel ready and rested and want her here. It's hard to think of my 3 week old baby who has spent a mere few hours in my arms. How glad I am to have two other sweet girls to squeeze when I get home. Send prayers for Lily's heart and lungs to do well so we can come home on a small to moderate amount of oxygen. None of this high flow business.

Tuesday, November 09, 2010

Surgery Complete

I'm home again after a long day in the surgical waiting room. I am realizing now how much has happened for Lily in the past 24 hours so I had better back track.
Yesterday Cardiology came and discussed their recommendations with me. They said that right now her heart issues are mild, and they are fixable with surgery. They felt that right now we can treat her medically instead of surgically and we can always decide to do surgery down the road if she isn't doing well. I was happy with this plan. They also said we could go ahead with G-tube placement and the nissen.
So Surgery was called and came up to poke at her tummy and discuss the procedure with me. He said we could probably do it Thursday. I went home and then got a call saying it would be done tomorrow (today) most likely in the afternoon. Zar and his dad went last night to see her and give her a blessing. This morning we called to check on her and they said she was getting ready to go to surgery at 9:15. AH! So I jumped out of bed and and dragged my kids up to my moms and made it to the hospital five minutes after she went to surgery. Dang it.
I had a good book and read in the waiting room, and thought she would be done about 11:30 or noon. She was done about 2. Like her sister she has awful veins and is a difficult intubation, but she did well. There was a bit of a complication which means we can't use her new button for 5 to 7 days instead of 1 to 2, so that's a bummer, but I'm used to my trisomy kids taking longer to come off vents, get out of the ICU, etc. They like to take their sweet time.
She is doing well and will get IV nutrition until we can give the button a shot. And that's where we are today.
Phone update: no on heart surgery for now, Lily just went back for Nissen and G-tube placement. More updates after surgery!

Sunday, November 07, 2010

No News is Good News

Before extubation. Lots of face tape.

The Cin-A-BON belly button. Wow.

For those not accustomed Inpatient Proceedings, not much happens on weekends. No tests, no procedures, mostly just laying around waiting for Monday. So no blog posts since Friday because Lily is hanging out doing well, and we have just been pondering the big decisions this week will likely bring. She was extubated yesterday meaning she didn't need the ventilator anymore, and did just fine. She wore one Utah pink sock during the game which did no good, guess she should have worn both.
Zar and I have are continually discussing our constantly changing and often conflicting feelings about major surgery, palliative care, medical management, etc etc etc, and although it's good and healthy to talk it all out, that's all the good our discussions have done. Tomorrow cardiology will give us their recommendations and options and let us know if they are going to present her at conference on Wednesday. So maybe tomorrow we will have some idea of what is to come, or

we might have nothing decided until Wednesday or beyond.
Lily is still on high flow oxygen but has gone back down a bit on her flow. (good.) She is moving up on her feedings by NJ after her procedure and tolerating it well. (good.) She has terrible veins and is going through IVs like crazy (bad) so hopefully we can get her on full feeds soon and won't have to worry about IV fluids. Until we do surgery. Or not. But she really can't come home without some sort of gastric type surgery (yikes), unless she comes home on NJ feeds, which would be rough, and continuous, and easily pulled out...yikes. There is a lot of think about.
Funny to think how when she was born and did okay I thought SURELY she would be home for Halloween. I can easily see how this hospital stay could stretch on and on and on. Happy 3 week birthday Lily Pie.

Friday, November 05, 2010

Very Sweet Pictures. And not a lot of info.

mmmm cozy...

Can you believe how different Lily looks from when she was born? She's lost her newborn look and is so gorgeous. Not that she wasn't gorgeous when she was born but WOW she looks grown up.
Lily was much more comfortable today. The lasix and albuterol treatments have helped her breath a lot easier. It was so nice to sit with her while she was wide awake and not struggling.
She finally went back for her heart cath at 3pm. I couldn't believe it when they told me it would take 3 hours, but it did.
Afterwards we sat down with her cardiologist and looked at amazing videos of her little heart and lung vessels. Yes, her PDA is open but not making all that much of a difference. Yes her vessels are slightly smaller than normal but not making all that much of a difference. Yes there is a partial shelf of tissue that isn't making all that much of a difference. Yes she has a VSD and an ASD that aren't making all that much of a difference. But all these added together apparently are making a difference.
The doctor discussed medications with us, the same ones Charlotte was on. And of course oxygen. Once we started asking questions he went into surgery mode, talking about clipping off the PDA and trying to open up that shelf with a balloon which could be done through her side. And then he discussed opening up her chest and doing both of those things and opening up her narrowed vessels and partially closing her ASD which could lead to "normal plumbing." I didn't dare ask if that would mean she wouldn't need oxygen. They couldn't promise that anyway.
The doctor needed to get the final values and such, and then we would have a little more information. There is also a care conference between the cardiologists and surgeons on Wednesday and they want to present her case and discuss with everyone the options and what is reasonable, etc.
In the end obviously it is our decision. It's hard to believe that meds alone will be enough with how bad she was doing yesterday and how much high flow oxygen she is using. I don't want to bring her home to watch her struggle to breath. I am not opposed to doing surgery through a catheter or with balloons and clips--today's procedure was along those lines. I am not comfortable, at this point, with cracking open her chest and putting her through open heart surgery, especially if the results are unclear and she still will be on oxygen. Heart surgery was never an option with Charlotte so we didn't go through this. However, she didn't have an open PDA and had a small VSD which closed on it's own and a small ASD which was actually beneficial to her, so I don't see how doing all this surgically for Lily could make her heart healthier than Charlotte's was.
At this point we will treat with lasix and see how she does the next few days. I will want to hear the differing opinions of the docs after the conference on Wednesday and then hopefully they will help us decide what steps to take. I need to think this through and get my questions ready. It's hard to believe how awful yesterday was, and how last night I thought we might be saying goodbye to her this evening. Things change so fast and I am reminding myself of that fact even as I make plans assuming she will do okay these next few days. We could be right back where we were last night any minute, but at least for now we are able to keep her comfortable. Tonight she is riding the ventilator as she recovers from her procedure, and hopefully as she wakes up she will start taking over her breathing for herself and come off the ventilator without issue. If not, that's a whole new ball game.
Thank you all so much for all your thoughts and comments and prayers! The ride continues...

Thursday, November 04, 2010

Perfect words.

"Would you like a boy or girl?" and I reply
all blushing, body blooming like a rose
"It doesn't matter much to me; all I
want is ten fingers and ten fine strong toes-
A healthy baby with a lusty cry."

Such strange conditions, idly placed upon
our love of children born beneath our hearts.
As if we would not love a little one
that's formed awry, confusion in it's parts-
or treasure legs we know will never run.

Can you not stay, my baby? We'll repair
your damaged body, if you'll but live.
I fold myself in faith, hide from despair
Remain awhile--we have so much to give
each other--so much joy to share.

I mourn each problem but do not forget
The spirit held here by your mortal clay
I know that all will be restored--and yet
beg for this sooner-can't it be today?-
and weep for hopes all shattered, dreams unmet.

You're such a welcome burden, so I cry
to our shared Father, He who understands
and cares for me and loves you more than I
know how. Your fragile life rests in His hands.
And I? I'll raise you now...or by and by.

--Louise Helps
Our little family is in that crazy surreal place that feels unfortunately familiar. Where everyday issues feel so stupid and trivial (because they ARE!) and yet I keep telling myself that by Thanksgiving...or maybe Christmas...or maybe much, much sooner...things will be better, things will be one way or the other...and anything is better than this.

Lily is still having a hard time.

They thought maybe her pneumonia was worse, or maybe she had developed an infection on top of it, so they did an x-ray and echo, as I was hoping they would. The new echo showed her PDA is still not closed and also showed some more turbulence in her heart. The cardiologist came up and explained that it appears that there may be some narrowing of her pulmonary vessels or a sort of "shelf" of tissue in her heart that should have been reabsorbed in the embryonic phase but wasn't, and is partially blocking the return of blood from her lungs. This has caused some congestion and high pressure, and so the blood is backing up into her lung tissue, and extra fluid is gathering in her lungs and other tissues. To me this means she is in heart failure, although the nurse, after calling it that, corrected himself and called it...pulmonary return....I can't remember, it's heart failure. (I've always hated heart stuff, ever since nursing school.) Also it seems that giving her extra oxygen over the past week has made things worse by flooding her lungs with more blood and therefore more congestion. So Lily is looking pale and is working harder to breath. Her hands, feet and face are puffy. She is tired but woke up for a long time today and looked around and pulled her little hand out of mine when I held it too long, just like any kid of mine would.
Lily will have a heart catheterization tomorrow afternoon. This just means they will snake a catheter through a vein in her leg up to her heart to explore and squirt dye around and measure pressures. After that they will know whether there is something that can be fixed surgically or not, and we will discuss the next step. Even if they feel surgery is possible, there is a good chance we will not put her through it. We hope that when the time comes we will be guided by God and the doctors and Lily as to what to do.
So it seems very strange that Zar and I are sitting on the couch at home with Ava after watching "How to Train Your Dragon" and putting Ella to bed, and just waiting for tomorrow. We've both cried a bunch today and had serious discussions about life or death and now we're just waiting. Once in awhile we look at each other and just smile sadly but until we get more information there is nothing left to say. Surreal and familiar.
And I'm 30.
Today I'm Grateful for:
The girls sleeping in until almost 9 this morning so I was able to shower all on my own and dry my hair.
The fact that it was my birthday so every few minutes my phone would beep with a reminder that people were thinking of us, even if only because facebook prompted them to do so.
That Zar and the girls and I got to have a nice little lunch together--grilled cheese and diet coke for me--because our birthday dinner out was canceled.
That our families are so wonderful and close knit and available to watch Ella and Ava so we could spend the afternoon with Lily and talk to the doctors.
Friends who show up to support us or even just call and let us know they are praying for us.
Neighbors and friends who have supplied us with dinners and I haven't had to worry about feeding the family at all since coming home.
That when passing the Sinclair Station today Ella yelled "MOM! Dina-saw! Rarrr!"
That when I walked into my moms all red and puffy faced, Ava still looked up and smiled her big gorgeous smile and squealed, and Ella yelled "MOM! MINNIE!"
That Ava's hair is so gorgeous.
That I took the girls to the playground this morning and Ella spent a good amount of time going down the slide and then running back to me with a hug and saying "Have fun!" and then running back to the slide.
That it was warm and clear and gorgeous today.
That Lily was awake for a couple hours today and looked at me and held my hand and then yanked it away.
That we had an excellent nurse today.
That the people at Primary's are willing to treat Lily and not deny her any possible treatment because of her trisomy, but also recognize that there are worse things than death.
For Faith. For Hymns. For Prayers. For Hope.
That Lily has a "cinnamon roll" belly button like her big sister did, but Lily's is HUGE and we call it a Cinn-A-BON."
That I feel healthy and strong and don't feel like I just had major abdominal surgery.
For spinach smoothies.
That despite everything I'm still sleeping well.
For my sweet strong husband and our sweet strong marriage and that with all we've been through it's always brought us closer together.
For this goofy blog and all the support I get from the people who read it.
That my 20s are over.
That I know Lily is in God's hands and as afraid as I am of making big life and death decisions, I know that really they are God's and not mine and as hard as some of my life experiences have been, they have made me better, made my marriage better, made me much stronger and my life is incredibly rich and full.
That Lily and Charlotte and Ella and Ava are forever my daughters and one day we will all be together again, and how wonderful it will be to see my girls again and how familiar they will be to me.
That if Lily is only meant to be here with us for a short time longer, that her suffering will be over and she will have earned her crown and glory and be with her big sister watching over us and letting us know they are close.
That I know Lily is a miracle no matter what tomorrow brings.

I'm too tired and blurry eyed tonight to adequately explain all I'm feeling. But along with the fear and aching and sorrow and grief, I am so full of gratitude for all I have, including my sweet lil' Lily-pie.


Lily had a bit of a rough day yesterday. She got a random bloody nose in the morning, and after being suctioned and cleaned up she was having a harder time breathing. Eventually she was put back on high flow oxygen. She also looked a little puffy to me, and when Zar went to visit her last night she looked puffy enough for him to mention it. Lily ended up getting Lasix to help her pee off extra fluid, which apparently did the trick as her breathing got easier and her lungs sound better this morning. Of course the fact that she is getting puffy isn't a good thing, and I am hoping today the docs will do another x-ray or echo or something to see if she is going into heart failure. With everything going on yesterday I didn't even ask about surgery or the pH probe results. Unfortunately the doctor on now is that same doc who didn't want us transferred from St. Marks just because he didn't want to deal with us. He came in yesterday, looked at me, said hi, and then asked the nurse if I was "the mom". The nurse said yes and the doc walked out. Never saw him again. I don't think we get along well. I'm glad he will be gone again after tomorrow.
So anyway, I'm feeling down today with these new developments. It's also my 30th birthday today. It would be really great if something positive would happen today for Lily. This is just a difficult place to be in. I'm not so sure now whether she should even have surgery for her feeding issues if her heart just isn't healthy enough to sustain her. This not knowing and waiting around is the worst. And who cares about her thyroid function and such if her heart just isn't strong enough? Frustrated and sad.

Tuesday, November 02, 2010


I forgot to take my camera today to the hospital, but rest assured Lily looks pretty much exactly the same as she did yesterday. The only difference is her hair is clean and fluffy today, but you'll just have to take my word for it. So here's a pic of our disappearing freezer space. I have started supplementing Ava's bottles with this stash and sneaking it to Ella in a breakfast "Banana drink." I figure the antibodies sure won't hurt, maybe help keep them less prone to colds this winter. I have not snuck it into Zar's food yet, but I'm tempted. Lily is still only getting 3.2 mls an hour through her tube after five days of nothing, so I've had time to build up my "food storage." I also have a full storage bin at the hospital, where they have an INCREDIBLE pump. I swear I was out of there in four minutes flat. 80 cycles a minute. But moving on...

Today the doctor was annoyed that it's taking surgery so long to set a date, but to tell the truth I'm quite nervous about surgery and have not really minded the delay. I have been impressed with how the docs have taken the initiative and have tested Lily for a bunch of issues Charlotte had without us prompting them, so I don't feel like we've been wasting time. For example, they checked her thyroid function which was borderline so they will recheck that and we will probably go home on Synthroid. We didn't catch Charlotte's hypothyroidism until she was almost a year old, as I recall. Maybe even older. It is the ultimate example of the first child being the "experimental kid." Lily will hopefully benefit a TON from what we learned from Charlotte, and my other girls have benefited as well. I'm a much more relaxed mom because of Charlotte, and less likely to lose it over little things that happen every day. I save my break downs for the big things...which unfortunately also occasionally happen every day. But seriously, I have my priorities much more in line because of my Boofus. If it weren't for her I'm afraid my girls would be dealing with a bulimic depressed lunatic. But I digress...

Anyway I figure a few more days of growing and getting over pneumonia won't hurt before surgery. It still may happen this week, especially if this doc has anything to say about it. Although it would be great to get it done before another IV goes bad. It's now in her foot, and soon it will cycle back to her head if we lose any more. I prefer the fluffy hair look.

Monday, November 01, 2010

Week 3 Begins

Was this really just over two weeks ago?

Kitty has had enough.


Lily Pie is finally being fed again through the thick white tube in her nose. It goes all the way down into her intestines so she can't reflux or aspirate. We moved her back down to low flow oxygen today as well. She was doing well until she fell asleep and got lazy--hopefully we won't have to put her back on high flow. One of her test results isn't back yet so no surgery set at this point.
Oh, and the forehead IV is out! What a dear little hairline. The orange oral tube was also removed while I was there today--it was just in to vent her tummy due to the high flow O2. It will have to go back in if she can't maintain on low flow. Let's hope for an uneventful night.