Friday, December 31, 2010

Year in Review

Well I read my 2010<-(this is a link) year in review this morning and was happy to see I accomplished (and then some) my goals for 2010.
Yes, I'm approximately the same weight. Yes, I got a kindle and therefore have read a lot more which I am loving. I am trying to keep my car clean, but now that I drive an awesome mom van there is a lot more room for mess, and therefore it may just appear cleaner. Ella is walking; that was a good one. And I accomplished my biggest goal, of having a new baby, expecting a baby, or adopting a baby. In fact I'm going to give myself an A+ on that one.
Year in Review--without looking back on blog posts, just what stands out in my mind.
January 2010--set goal to have a new baby by Jan 1, 2011. Asked Zar if we could adopt a baby from Haiti. He said no. Asked if, just IF, someone knocked on our door and offered us a baby, if we would take it. He said yes. A few days later that practically happened. We met Ava's first mom, loved her, committed to her and Ava, and began our very short adoption journey.
February--I'm sure it was quite cold and unpleasant. I do hate February. Luckily we had a few marvelous days in Disneyland, always a highlight of the year. Ella LOVED the characters, so many cute pictures. Oh, and I dragged Zar in to an ENT to have his tonsils looked at. He has always been a big, BIG snore-er and I had begun videotaping his apnea episodes at night to prove he was practically dying. In fact this may have happened in January, but the surgery--to take out his giant tonsils and open up his apparently at some point broken nose, was in February. He bravely succumbed.
March--On March 5th Zar called saying he was coughing up a little blood. That night it seemed to be not normal, so we called the on-call ENT and he met us at the hospital. By the time we got there Zar was coughing up A LOT of blood. He rushed him into surgery and I went and camped out in the waiting room, all by myself as it was late at night. And I ate. And ate. And ate. I was really, really taken with how much I was eating, and how it wasn't even making a dent in my hunger. And I can eat a lot under any circumstances, but this was extreme. Zar was released from the hospital at 2 am, I think, and after he was tucked in a drug induced sleep I took a pregnancy test I happened to have. And you know the result. So I stood in the bathroom and cried and shook, and knew, JUST KNEW, that this was another baby with trisomy. I lay in bed and pondered our adoption, and this new baby, and decided that I was NOT going to get to the end of the year and have ALMOST adopted a baby, and HAD a new baby which had passed away, and NOT have a new baby in arms. From then on there was no question on going through with the adoption. Two weeks later I told Zar I was pregnant. He got a big ole rash from the antibiotic they put him on after his surgery. He was not too happy I had put him through the whole ordeal, but goodness it was sure worth it. (for me.)
April--I took Ava's birth mom for her first appointment with my wonderful OB. A couple days later I went back for my first appointment. What a jolly laugh he had. I told Ava's birth mom I was pregnant, and she was nothing but excited, and I was relieved. I went to the neonatologist, had a first trimester screen done, which came back low risk for down syndrome, but high for trisomy 13 or 18. Which pretty much sealed the deal for me. However we went ahead and did a CVS which showed another girl, with the same diagnosis as Charlotte. Many tears all around. Oh well. Forge ahead.
May--On May 5th Ava was born via c-section. Oh she was tiny and sweet, at 5 lbs 14 oz. Oh she was a good girl right from the start, oh how dear, so dear. I spent a few days in the hospital hanging out with Ava and her birthmom, watching movies, had a bad encounter with a very poor creepy social worker, who was eventually fired for what happened. Heh heh. Took sweet Ava home, and found that the upside of actually giving birth is you are THAT MUCH more tired that you don't realize how exhausted you are from caring for a newborn.
June--I was pregnant, I had an infant, I had a 20 month old, I'm sure I pined for a nap. I cut my hair. My sister had her twin girls a few weeks early, but they did great, and suddenly my parents had FIVE granddaughters whereas just months before they had one living and one in heaven. Sheesh.
July--Ella was afraid of the fireworks at first, but warmed up slowly.
August--We went to Newport Beach where I had the awesome experience of sobbing at the waters edge with my giant belly, screaming toddler, and confused and frightened 3 month old. Lots of stares. Figured I would have to live and die in that spot as there was no way I could get back to the condo on my own and my family had changed their usual beach spot for the first time in like 20 years. Said some bad words. Was rescued by my parents after some frantic phone calls.
September--Was pregnant. Getting bigger by the second. At some point Zar got a new job at WGU which was such a giant thrill I can't even tell you. I got off the phone and yelled "HOT DOG!" and then had to watch a few hours of Mickey Mouse Clubhouse when Ella heard me.
October--oh I was SO uncomfortable. I had been getting a massage every other week which was all that kept me going. I highly recommend prenatal massage from someone who specializes in it. Ella turned 2 and I made a cake with Minnies. Then I scheduled and rescheduled my c-section. On October 17 Lily was born in the same room by the same doc as Charlotte, Ella and Ava. She was BIG, 7 lbs 13 oz and my uterus had nearly exploded due to fluid issues, and I was advised not to get preg ever again. (tiny smiley face). Lily spent 20 minutes with us and started grunting, and was whisked off to the NICU where she did pretty well for a few days, and then aspirated her milk and was whisked up to Primary Children's NICU where she spent the next month.
November--Lily got a g-tube and a nissen, went in and out of heart failure, was set up for heart surgery and then canceled, and eventually, finally, came home. A week later she had a couple blue spells and we went to the ER, but never really figured anything out.
December--Our adoption was FINALIZED!! We took Ava to the temple (post coming soon). Ella and Ava began playing together like sisters instead of just crawling on each other, laughing and clapping, so, so fun. Lily had more blue spells, had a normal EEG, and heart surgery may happen in February. She also got a terrible rash from the antibiotic she was put on to prevent UTIs. Rough month for Lily, let's hope 2011 treats her better! I went back to Bikram yoga after 2 years and am currently obsessed.

By January 1st 2012 I will:
Be approximately the same weight, but HEALTHY. Fit even.
I will have made many wonderful memories with my family. I will still be blogging. I will be a calm and peaceful mother. If Lily is still with us I will have done a good job on her daily physical therapy, and held her a lot. I will have devoted individual time to each of my girls, and my husband, and myself. I will have mastered Ava's hair care. I will have put Ella in a fun and safe preschool. I will stay positive. I will not FREAK OUT when the house is a mess and act like I'm going to end my life over it.
This was a wild, wild year. I am hoping for a more quiet one in 2011. 2010 gave me many, many gifts and now I just want to enjoy them and care for them and give them many snuggles.

Happy New Year.

Tuesday, December 28, 2010

Christmas 2010

Ava's fave present--the paper it came in
Yawn, another Elmo

The big hit--cozy coupe

Yawn, swedish fish
Merry Christmas

Thursday, December 23, 2010


It's Final!

60 Floors up!

Another quick and crazy trip to Vegas for Zar and his dad to go to the Bowl game. We won't focus on that, however.
As a Christmas Surprise in-laws got us rooms on the top floor of the Wynn. AWESOME. Plus it rained like crazy the entire time so we (as in the girls and I) spent very little time outside of the room. A brief venture out for some shopping and a bowl of noodles was enough. We just got in our jammies, turned on the TV and sat up in the cozy clouds for one day and two nights.
Ella took four baths in 24 hours, delighted with the TV that showed cartoons in the bathroom. We finally got the call verifying that Ava's adoption is final, which filled me with joy even though I already was considering it done. It was Lily's first trip and she did great. We took way too many oxygen tanks and had a detour in St. George on the way home when her oximeter probe stopped picking up for a replacement (LOVING IHC Homecare) but other than that it was all surprisingly easy, probably due to the fact that this isn't our first rodeo.
After a long ride home we are ready to jump right into Christmas mode and make the most of Ava's and Lily's first Christmas!

Saturday, December 18, 2010

3 Santas 3 kiddos

One Santa
Santa Two
Santa Three with One Baby...
Two Babies...

(Any co-workers take a close look at Santa Two...)

Friday, December 17, 2010

Impressive because there aren't piles and piles of toys, blocks, chewed up grapes and sippy cups surrounding Ava. Not so impressive because Ella is down for a nap.

Little Fatty Face.
Don't feel bad for her. Aunt Alex gives insulting nicknames to everyone...

...Smella and the best kid kitty ever.

Isn't that the cutest banana ever? Ella enjoyed eating it like a monkey, continuing her ever progressing Monkey Research.

Hilarious--I noticed our little nativity was missing Baby Jesus who had been replaced by this peanut ornament. Two year olds are awesome. Baby Jesus mysteriously returned this morning with tomato sauce on his blankie. Hmmm.
Home detoxing from all the stress and chocolate of the last few days. I ate like CRAZY yesterday, including a few plates of Christmas goodies that were meant to go out to neighbors. Sorry neighbors. Last night while eating pizza and hershey's kisses on the couch I decided to stay home today, catch up on laundry, cleaning, and other chores and consume nothing but water, spinach smoothies and a pomegranate. Add a bag of microwave popcorn to that list and I'm doing alright. Dinner doesn't count though. We are having Ultra Mormon Night and having Hawaiian Haystacks.
I am coming to terms with the fact that Christmas is next week. I didn't do cards this year, which is kind of a crime as we have two new babies. I am going to try and get a Valentines Day card out. No promises though. Lily may be having open heart surgery that month. Well back to the Baby Zoo.

Thursday, December 16, 2010

(Not Quite) Adoption Day!

I'm the Littlest Big Sister!!
Rare--3 sisters in the same picture!
And now for today's proceedings...

Getting my Hair done...

Waiting outside the Court Room with Dad....Hi Mom...

AND Done! (almost.)
Well, we almost finalized today! Yay!

In fact let's just say we did. Our part is done. Tomorrow a couple of original documents will be turned in (as opposed to the copies our attorney tried to get away with) and it will be complete.
I have been so very anxious this week as adoption day approached. I just knew something would go less than smoothly, and I can't tell you how relieved I am that it was just a paperwork issue, not the judge deciding I'm not capable of handling 3 kids 2 and under. Our judge is not known for being all snuggly and sweet and taking families into chambers and saying this is the best part of her job and let's all have a hug. I was quite shocked at how tough she was on Ava's birth mom (who handled her with INCREDIBLE grace) 7 months ago, so I have been nervous.
Because of this nervousness and feeling that things weren't going to go perfectly, we didn't treat today as a big happy celebration and invite our families to come and throw a party afterwards. We are saving that for our Temple day, which should be on the 30th, if all our T's get crossed in time. That is the day that I can focus on now (or will be able to tomorrow). I am so excited for that day, our true Adoption Day, our Forever Family Day. I could easily get all mushy and weepy right now about how much I love Ava, how much I love her Birth Mom, how grateful I am that they both came into my life, how I consider Ava my daughter and Birth mom my family, but it's still premature! The way I feel about it is today we got our marriage license and on the 30th is our WEDDING. Not many people get to celebrate a 2nd Wedding Day with all their friends and family and kids right there with them. I have felt that Ava has been part of our family ever since she was born so it's nice for the Law to recognize this fact. Now I just want to get her in that white dress!

Saturday, December 11, 2010

It's barely 9 pm on Saturday night and I am FIGHTING to stay awake. Can't wait to crawl into bed. It must be going around because Ava was fighting it too and has since been plopped into her crib with nary a whimper. There are about 7 trips up the stairs to come to transport Lily and all her paraphernalia and that's the only reason I'm not already sacked out.
Saturday--my day of rest--ie the day I go to work. Who knew I would eventually be saying "wow one more day of work a week would sure be nice..."
All girls are still somewhat snotty, Ella has developed a good deep rattle as well. Lily seemed more clear and then got her first Synagis shot yesterday (very expensive monthly RSV protection) and then had a couple of big desats last night. We are postulating that any fever, however slight, causes these little episodes. Luckily she pulls herself out of it (especially lucky since I slept right through the alarm last night) and they weren't as dramatic as last time. Darn it though. Not cool Lily. First outpatient cardiology appointment on Monday, we will see if they have any ideas. Also we will see if her echo shows any worsening of her pressures. I do not expect improvements based on the last few weeks. Zar and I briefly discussed "where we are" currently on surgeries if they would likely improve her cardio-pulmonary status, and we would still "strongly consider" major interventions.

In better news, she is doing great in physical therapy and shows a lot of potential. She is tolerating her increased feeds well so she isn't on the tube 24 hours a day.
Man, Cindy Crawford is REALLY wearing me out!

Wednesday, December 08, 2010

Staying Active

I never used to eat burgers. I didn't even like them. I still don't like them all that much. And yet, I find myself eating burgers these days...quite a bit more often. Like yesterday. And today. And fries, lets not forget those. I have those even more than burgers. And I'm embarrassed to admit that we can't even drive by a Sonic or McDonalds without Ella screeching "FRIES!" from the backseat, even from a dead sleep. Or so it seems.
When I was hideously pregnant I would promise myself once this baby came I would become an ATHLETE. Zar got a real kick out of that. I would say "Once I'm not hideously pregnant I will run and lift and rise early in the morning to do so, arriving home just as my husband leaves for work and my babies awake, and I will glow. I will smile, pat my face dry and attack my day feeling like a goddess." Turns out life didn't get easier once the giant belly was gone. Turns out it's much more busy, strangely. And turns out I value sleep, far, FAR more than I do a chilly power walk.
I am also concerned for Ella, who can spend the entire day camped out on the couch demanding a steady diet of Minnie, Elmo, and fruit snacks. I would say "Well, her sister is in the NICU" or "Well she has a snotty nose" or "Well we had a hard night" and I would let this happen. (She inherited this from dad; I am not a lover of TV. Not all day TV anyway.) But in the summer I would take her to the park nearly every day I had off and let her play for hours while I lounged with Ava under the weight of my terrifying belly. It was a grand summer, even under the circumstances. And afterwards Ella would sleep for hours, and sometimes, so would I.
Now it is miserable and cold. Yesterday I got desperate, loaded up my brood and took them to "The Indoor Park", aka, Arctic Circle, where Ella ran between the slide and our table to get another fry. Yes she was active, but really? We left covered in fry sauce and general fast food grubbiness. And yet, we went back today again, this time with a friend and her son, and I had ANOTHER burger and pile of fries. A spinach smoothie each morning probably does not counteract this. And yes, carrying two infant seats and an oxygen tank in and out is a work out, and looks quite pathetic...but I wouldn't say I broke a sweat.
So my goal, now, in this strange new world of triple motherhood/special needs motherhood/trying to eventually go back to work, is not to Become An Athlete, but just not to gain 30 lbs. I logged back into the ole Weight Watchers, the only thing that has even really worked for me, and found they have totally changed their program which is just too exhausting for me to figure out right now. And they don't have low point items at Arctic Circle. I have delved back into my extensive workout dvd collection, choosing Cindy Crawford's "Shape Your Body" circa 1992, a classic, yes, but did we ever really think, even in high school, that Cindy got that bod doing leg swings and side bends? Plus leg swings become more difficult with two mobile children and a lot of tubes and wires snaking about my living room.
I will continue to look for solutions. Could I have done a few scissor arms and small twists during this rare triple nap instead of blogging about burgers? Yes. But one must have priorities. And maternity pants are really quite cozy.

Sunday, December 05, 2010

Happy 32nd Birthday Zar

Zar is 32 today! We had pancakes. All three girls woke up all crusty and gross, so we have spent a quiet day at home. Right now everyone is asleep but me, so I am quickly catching up on the blog.
Lily has had no other episodes since her last one on Tuesday. She clearly has a cold bug and I'm chalking it all up to that, fingers crossed.
She has seen her surgeon, her physical therapist, an occupational therapist, and a speech therapist since our ER visit. We have turned up her continuous feeds so she now gets a few hours off the pump each day and she is tolerating it well. We will continue to work in the direction of bolus feeds. Her therapists felt she has a lot to work with physically. She tries to lift her head when on her tummy, moves all her limbs and grasps, and was clearly interested in sucking on a milk soaked q-tip. All great signs.
We are seeing therapy more this week and next Monday she is going to cardiology for another echo and we will see if her numbers and pressures have gotten worse. Her sats have been a bit harder to keep up which of course is easily related to the cold and resulting snot.
I'm very excited for some upcoming Christmas activities--we are going to a Hope Kids Christmas party, a Make a Wish Christmas party (which will be our first time in the Make a wish building as Boof never actually "made her wish") an Angels Hands Christmas party, and various other fun activities. I made it to the Festival of Trees the other night which I thought might make me very sad as we didn't do a tree this year due to life craziness. Instead it helped me finally get into the Christmas spirit. Now if I could just get Zar to help me get the tree up the basement stairs.
We also have Ava's finalization coming up, which I just want over and done with. That will feel so awesome to walk out of that court house. Ava is pulling up to stand and this morning she forgot she can't walk yet and let go of my shoulder--falling flat on her back. With her giant 95th percentile head, it was quite a thunderous boom. She whimpered for a minute while Ella yelled "WHA HAPPENED!? WHA HAPPENED!?" and then was happy again.
Ella has a crusty nose, loves our new "big car" and chocolate milk, and enjoys talking about the potty but not actually using it.
Update complete.

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???