A Year Ago Today

I got my bfp. I remember it like it was yesterday... At work, wondering what I was going to drink for New Years Eve, planning on having a bunch of people over to the house. Figured I should test just to make sure, since my period was due the next day or so.

PREGNANT.

I was so excited I could hardly concentrate. My co-workers must have hated me that day because I spent the entire time running outside to talk on the phone, hanging out with my best friend and her husband in the meeting room, talking with Phil, and updating the girls on GP. We only told our best friends that day, since they were in town for New Years and they were both expecting as well.

That night I drank sparkling grape juice and dreamed about what the New Year would bring. I never imagined such a bitter sweet ending.

14-15 weeks

I keep avoiding new blog entries because progress has seemed to slow down the past couple of weeks. Not the super happy positive news I like to share, but reality...

Lillian had an appointment last week with her Developmental Pediatrician. She was scheduled for a swallow study, but they canceled it when we told them we were already feeding Lillian more through the bottle and that I had widened the nipple. Since she doesn't appear to be aspirating, and hasn't had a chest cold or any signs of aspiration, they just said continue doing what we're doing.

One thing they did schedule was an upper GI in preperation for a G-tube. We have an appointment with a surgeon in 3 weeks to talk about the installation process, and hopefully schedule the procedure. While Lillian is eating more from her bottle, it's just not enough. It takes her nearly an hour to eat an ounce, and that's on a good day. The past two days she has really been a challenge to feed. Hardly sucking and spitting out what she does suck. I'm literally in tears typing this because it feels like no matter how much time we spend trying to eat, she just doesn't want to. I don't like the thought of force feeding my child. How crazy is it that I want her to eat now, and some time down the road I'm going to be regulating how much she eats.

Speaking of regulating how much she eats, poor little Lillian is already on a diet. Her dietician cut back her bottle by 5 mls (not much, I know) but I didn't think she would be on such a strict diet so soon. At least she doesn't care since she hardly has an appetite. So now she gets 115 mls 7 times a day.

I feel like this week she has just completely declined in her abilities. Last week she could hold her head up and she was taking her bottle better. She was batting at her toys and starting to make more noises "talking". This week she just lets her head roll all over. She wont hold it up. She wont take her bottle. When I lay her down to play with her toys, she hardly even tries. She isn't talking much either. I'm really hoping she's just worn out from the holidays and once she gets back on schedule she will surprise us and start to do better again, but I'm starting to wonder how realistic that is. I just need some kind of indication that she's still functioning. Fuck.

yay!

Lillian just put a toy in her mouth for the first time. Ever. She loves her Lamaze Peacock toy!

12 Weeks

So much has happened in the past couple of weeks. We had an appointment with the Pulmonologist, which led to a bronchoscopy. The results back from that showed that Lillian doesn't have any major obstruction in her airway.

Last week we had a meeting with our Endocrinologist Todd Nebesio. So far we really like him, but he isn't very experienced with infants that have PWS. He was very hesitant to give Lillian growth hormones this young. We basically told him if he doesn't, we'll find someone else that will. We would rather he give us a try so that the next family in our shoes can get help ASAP. Hopefully we can set a new standard for his PWS patients. Anyway, we found out today that we can get the GH, but he wants us to have another sleep study first. Lillian freaked out during her last sleep study, so it sucks we have to have another, but it's worth it if it means she can start GH treatment. We should find out in a couple days when that study is scheduled. Sometimes they take weeks or months to schedule. Fingers crossed it's a quick appointment for us.

Yesterday we met with Dr. Hainline, the Prader Willi specialist, a genetics counselor, and a dietitian. Lillian is in the 50th percentile for height and weight, which would normally be a good thing, but the dietitian would prefer she be closer to the 25th percentile. She gave us a new feeding schedule and finally gave us more than 3 hours at night! We can finally sleep up to 5 hours straight as long as Lillian doesn't wake us up first.

I also got a call today from the regular pediatrician's office about getting a shot monthly that's supposed to keep her from getting respiratory infections. Now that I think about it, I should probably call Dr. Hainline and get that Ok'd by him. She also has a clogged tear duct, which is no big deal... but it's discharge is kind of green so we're going to the doctor tomorrow to make sure it isn't leading into an infection.

We're still going strong with physical therapy and occupational therapy. I really like both therapists and they tend to stay past their required 1 hour slot and work extra with us. We're going to be working together for at least three years, so I'm really glad we like each other! We might go from 2 meetings a week to 3-4 a week in the future, so I'm SO grateful they work well with Lillian.

Here's the low-down on the other stuff, and a few pictures:

Age - 12 weeks

Weight - 11lbs 3oz

Height - 22.5 inches

Sleeping habits - She sleeps pretty well from 9-4:30 or 5am. Takes 2-3 naps a day that are about an hour long.

Eating habits - She takes 28oz a day. About 18-20 of that is breast milk. Her suck is getting stronger and she's able to take about 40-60ml by bottle a day.

Favorite activity - She LOVES her play gym. She starting to realize her hands can touch the things that hang from the bars and she gets really excited about it!

Cutest Moment of the Week - She kept accidentally hitting her toy that makes chime noises and looked over at it each time. She was trying to figure out how to bring her arms in and hit it again. She also keeps pulling her hand to her mouth and tasting her hands.
Milestones - Better hand coordination, better sucking, rolling from side to back

Firsts - She went to church for the first time last Sunday and also went out to dinner with us at DeAngelos.

10 weeks

Lillian is doing so well! She's been awake more the past few days and her personality is really coming out. She's showing a preference for things, like a clean diaper, a position to sleep in, a time to eat, etc. She lets us know when we aren't doing exactly what she wants ;). Thankfully she isn't throwing fits, but she'll let out a cry or a "fuss" when she needs to.

Thanksgiving was a big day for all of us. It was the longest car ride she has been on (2 hours) and she was around a LOT of family all day. She definitely didn't want to be held by a bunch of people, so she was over it by the end of the day. We'll have to come up with a better strategy for Christmas... like NOT skipping her nap.

I'm still pumping every 2-3 hours and finally started seeing an increase in milk supply this week. I swear every time I'm ready to give up, it increases just enough to keep me going!

Lillian has her 2 month appointment and weighed 10.5 lbs! She got her DTaP and rotavirus vaccine, both a week apart. She also had a bronchoscopy this week to check her airway for obstruction. The results came back great and thankfully her breathing is expected to improve as her muscle tone improves. Speaking of muscle tone, we met with the PT for the first time this week and I really like her! She suggested that in a couple months Lillian have 2 PT appointments a week on top of her one OT appointment. Whatever it takes to get her strong we will do. Plus, it's fun for Lillian, she just thinks we're playing :).

Some firsts this week were: First Thanksgiving, first trip to Madison to visit her extended family, first time in a restaurant (Opie Taylors on the square downtown for take-out), first Christmas lighting and Christmas tree, and first tailgate (IU v Purdue!).

There are so many times I think "I should write a blog about this" but never take the time to do it. One of those things I should devote a whole blog entry to is my husband. I can't even begin to describe how helpful and supportive he is. He is a GREAT dad to Lillian and a wonderful husband to me. There are times when I want him around that he isn't always there, but when I NEED him, he's by my side. He gets up for late night feedings so I can pump while he takes care of Lillian. He takes her during the day when I need some "me" time or when she's getting heavy, or just need a break. He shares his feelings about being a dad to a little girl with special needs. He apologizes when necessary. I just love him.

Here are some recent photos of Lillian:

Deep Breaths.

I don't know if it's just sinking in more, or if it's hormones, or just the roller coaster that I'm forever going to be riding, but this has been a very tough emotional week for me.

The older Lillian gets and the more she's becoming her own person, I can't help but just feel so sad that she is living a life that is going to be so hard for her. I look at her and just love her so much. I want so badly for everything to be the way we expected it to in the beginning. I want her to have everything that her peers will have. I want her to be active in school and have friends and boyfriends and get married. I want her to travel and be adventurous and go to college. The reality of her life is so different from what we want for her.

I struggle with figuring out how she brings me so much joy, when the thought of her life makes me so sad. I can't even put into words the love I have for her, and the joy she brings when she smiles or discovers something new, or even just when she sighs after a big yawn and rubs her eyes. I was doing so well not stressing about the future, but it's so hard to not think about when I'm faced with all the doctor appointments and therapy sessions and even though I know it's not a lost cause, sometimes it feels that way.

So much to say, so little time!

If only I could convince myself to take the time to write nightly reflections! (But just typing that first sentence I had to stop and talk to Lillian. She's quite fussy when she's fighting her morning nap!)

Lillian turned 8 weeks old Thursday and she's been showing so much personality! She loves it when we make faces at her, and even gave me a little giggle this week when we were playing. She stays awake longer, but sleeps through most of our trips outside the house. As soon as we get home she's wide eyed, alert, and ready to be entertained! This week we took our first trip to the park, and went for several long walks downtown with Zoe and Ayla.

Some pretty exciting news on the medical issues: I've contacted a doctor in Florida that has been a HUGE help providing so much information on ways to help Lillian, and giving us so much hope for the future. She is sending me information on supplements that will increase Lillian's energy and alertness since she's primarily getting breast milk. If we fed her formula, she would get some of them from the formula, but I would rather her get my immunities from breast milk and give her the other supplements separately.

She also answered some questions I asked about Lillian's future as an independent adult. She thinks Lillian will more than likely be able to live independently, and even suggested that they WILL have a cure by the time Lillian is an adult. Hearing that from someone who is currently researching Prader-Willi means so much. I truly believe there will either be a cure for the hunger issues, or something that will greatly help them manage their hunger problems... meaning she will be given the opportunity to have a healthy happy adult life without the need to be monitored by a care taker.

I'm so convinced that Lillian will have a fabulous life! I look at her and can't see it any other way. She's already doing everything she's expected to do, with the exception of her eating through the feeding tube. When we give her the chance to eat from a bottle she improves every time.

There are times I question what God's plans are for our future. I wonder if He changed His plans for us when we were pregnant with Lillian. It's crazy to think about this, but around 20 weeks I had unexplained bleeding and begged Him not to take our baby from us. We were supposed to go on a cruise 2 weeks later (which happened to be in the beginning of the swine flu outbreak in Mexico) and canceled the trip because we didn't want to risk more bleeding or have something happen that could jeopardize the pregnancy. Normally I wouldn't be so cautious and it was a last minute decision to cancel the cruise knowing we would lose the deposit we paid... Our doctor was pretty adamant about us staying home too. I can't help but wonder what might have happened if we went on the cruise. Yes, I know this is crazy, but sometimes I wonder what would have happened. Would I have gotten swine flu? Could we have had an accident snorkeling, or on another excursion? I'm so thankful for being given Lillian and the way things turned out, but it's caused me to wonder if God changes plans when he answers our prayers...

Some pictures of Lillian this week:

7 Weeks and pics

Age - 7 weeks
Weight - no update
Height - no update
Sleeping habit - She's starting to really fight sleep, but still sleeps well once she's asleep. She tends to flail her arms to keep herself awake. It's cute :)
Eating habits - She's getting about 95% breast milk now. She eats 80 ml every 3 hours. She's starting to take her bottle much better, really figuring out the suck-swallow routine
Favorite activity - She likes her activity mat and being held over our shoulders so she can look around.
Cutest Moment of the Week - She threw her first fit. It was so cute because she was just fussing and being really vocal. My mom was there to see it and we just watched her and giggled about it!

Milestones - She's starting to try to lift her head. She can lift it when on her tummy to move her head from side to side, but it irritates her that she can't lift it higher. She smiles at me when I tickle her, and she's all smiles first thing in the morning.
Firsts - She went to a store for the first time - a very small store called Barefoot Kids, we had our first stroller trip alone to the massage therapist, and she went to her first social party for a friend that made tenure at her job. She had her first real bath in her newborn bath tub.

Prader Willi Syndrome

October 21st we got Lillian's diagnosis. She has a genetic disorder called Prader Willi Syndrome. I don't want to go into details about what that means because frankly I'm tired of explaining it and anyone can easily google it. If you care to know about the disorder, check out www.pwsausa.org.

The bad news is - there's no cure. The good news is, God gave us a beautiful little girl, she's healthy, she has a huge family that loves her VERY very very much, and lots of friends that will treat her no different than any other kid her age. We are truely blessed.

I've learned a lot in the last two weeks thanks to this tiny little person. I've learned how important and how wonderful it is to live in the present. I've learned not to stress over the future, because situations change, life throws you curve balls, and the best times in life can be wasted worrying about what is yet to come.

I've learned that it's ok to be disappointed. We try to plan things in life, we have expectations, and when those expectations aren't met, it's ok to grieve. Grieving is healthy and an important step to moving forward.

I've learned to love unconditionally. I thought this lesson was learned when I married my husband... boy was I wrong! I look at my daughter now and I don't see the feeding tube. I don't dwell over the thought of taking care of her for the rest of her life, the time and energy it will take to keep her healthy, or the lost dreams I had for her. I have new dreams for her now and they are no less important than the ones we previously had, just different.

I've learned to accept help. I've learned to lean on other people when I'm not strong enough to get through the day. I've learned to count on faith and love and God.

These past two weeks have changed my life forever and I'm so grateful that God has chosen us to be Lillian's parents. We may never glide through life easily, but we will be stronger, grateful, and more faithful because of her.

If you're following this blog, it's taking a different turn. Until now I've kept it pretty much surface stuff. Things like updates and milestones and cutesy pictures. There will still be updates and milestones and pictures, but there will be more posts about ups and downs as we go through this journey of being Lillian's parents. I hope one day she can read it and see how much we love her and will do anything for her... and she'll get to follow her progress to being the amazing woman I know she will be.

6 weeks

Age - 6 weeks
Weight - 8lbs 3oz
Height - 21.5 inches
Sleeping habit - She still sleeps quite a bit, but she has her predictable wake moments. Usually 5am, 7am - 9:30am, 11am-12pm, 2pm - 5pm, 7pm - 9pm.
Eating habits - She's still eating mostly through her feeding tube. She's at 75ml every 3 hours this week. She's still getting half-3/4 breast milk and the rest is supplemented with formula. She eats from a bottle 5mls twice a day.
Favorite activity - She likes to visit her grandma and watch the fan on the ceiling!
Cutest Moment of the Week - She sighs when she yawns. It gets me every time :)
Milestones - She's doing better holding her head up. She still has a long way to go, but can lift her head up and move it to the side. She rolls on to her side, and she also puts her fingers in her mouth!
Firsts - I started bottle feeding her this week a little bit. She also wore her first dress, and celebrated her first halloween! She met her cousins for the first time and went for her first drive alone with mommy :) She also cried for the longest period of time during her sleep study :( It was sad, but nice to know she could actually cry.

Early Intervention

As much as I'm thrilled that Lillian is able to get the help she needs, it makes me so sad to know that she's being evaluated by a complete stranger tomorrow who will ultimately decide what kind of therapy she needs without even knowing a diagnosis.

I want her to start therapy. I want to help her. It just makes this all a reality that I haven't had to face for the almost three weeks that we've been home from the hospital. Those three weeks we haven't had to hear negative comments about her condition and we haven't had to talk about the troubles she'll face in the time ahead. We haven't had to do anything but love her and treat her like any other newborn baby. I really don't want that to change.

Even though we haven't been faced with doctors or therapists for the last three weeks, there's still a little voice inside me that questions her every movement. Are her movements normal? Is she holding her hands the right way? Should she be able to move her head more? Does she sleep too much? Am I expecting too much from her? Am I doing enough to stimulate her? Why doesn't she cry like other babies?

Part of me is still holding out that all of the doctors are wrong. They saw a baby that is calm and content and decided something was wrong with her and have been trying to diagnose her every move ever since, and along the way convinced us that something is wrong with our baby. I know that it's a crazy thought, but it's easier to be in denial about everything then have to deal with it.

I guess I should go back to taking things one day at a time. At least we know she will start getting the help she needs after this evaluation.

Falling for Baby in 2009

4 Weeks and pics

Age - 4 weeks
Weight - 7lbs 11oz
Height - 21.5 inches
Sleeping habit - She sleeps a lot still, but tends to wake up around 4am, 7am, 2pm-4pm, and again around 7-9pm
Eating habits - She's still eating through her feeding tube. She's at 65ml every 3 hours this week. Right now she's getting half breast milk and half formula.
Favorite activity - She loves to have tummy time on mommy and daddy, sleep, and be held and talked to.
Cutest Moment of the Week - Her uncle Cullen was holding her for the first time and she screamed the loudest scream in her sleep. It made us all laugh because she's usually so quiet!
Milestones - turning head from side to side, making eye contact, following voices with her eyes
Firsts - She wore her first cloth diapers this week and also bounced in her bouncer for the first time! Her first outing was to visit some friends at a camp site, and her first public outing was to Oliver Winery for some fall pictures!

2 Weeks 5 Days (and some photos)

Lillian Rose was born on September 17, 2009 (6lbs 2.8oz, 20.5 inches) fourteen hours after I was admitted to the hospital due to a drop in her heart rate at our 41 week NST.

A brief breakdown of the labor:

Sept 16 - NST at doctors office showed a decrease in the baby's heart rate and I was sent immediately to the hospital for further monitoring.

2 hours later they broke my water and started pitocin. Baby didn't respond well to pitocin, so they stopped the pitocin and let me dilate naturally to 9 cm after lots of walking, moving, swaying, screaming, and seriously painful contractions. I received an epidural around 7cm at approximently 3:30am. I dilated to 9cm and then the doctor determined it was time to re-start pitocin to get the baby out ASAP, or send me for an emergency c-section.

Lillian was positioned in my birth canal sideways with her cord wrapped around her neck. My cervix didn't center well and it was difficult to push her completely out, so she was delivered with forceps (which caused me to hurt like non other when I was recovering...).

Lillian's pediatrician was thankfully present during the entire 45 minutes that I pushed during delivery. She immediately took her to observe and placed her on oxygen. She determined that Lillian looked "Low tone" and after letting me hold her and talk to her, they took her off to the special care nursery. I had no idea what a roller coaster ride we were in for at this point.

A breakdown of Lillian's first 13 days in the hospital:

- Born Thursday September 17, 2009 at 8:32am
- IV placed in her belly button and given oxygen
- Friday I got to change her diaper for the first time in the special care nursery
- She was given a CT scan (which came back clear) and they placed an IV in her head. She was also taken off oxygen and able to take in room air.
- Saturday Lillian took her first helicopter ride to Riley Hospital in Indianapolis and placed on a feeding tube. I was absolutely devastated when they took her.
- When we arrived at the NICU for the first time, we found her laying in her warmer sucking on a pacifier (for the first time). Her nurse was Kristen and we absolutely loved that nurse!
- Sunday was the first day my milk came in. Lillian remained monitored in the NICU and we learned how to care for her during her feedings and check ups.
- Monday was her first bath and I was allowed to breast feed her for the first time. She also got her MRI that night, which came back clear.
- Tuesday was the first day we put a full outfit on her. It was pink with polka dots and absolutely adorable!
- Wednesday was the first time we heard her cry since the delivery. We were bathing her on the scale after weighing her, and she flailed her arms and let out a wail. We were happy to hear her sweet cry! This was also the first time I had ever seen her yawn.
- Thursday was the first attempt at bottle feeding. This did not go well. We met the Developmental Pediatrician and she determined we would not be feeding Lillian by mouth until she passes her swallow study in November.
- Friday Lillian was given hand splints for her wrists. We were trained on her Apnea monitor, trained in CPR, learned how to place her feeding tube, and I was able to breastfeed with a nipple shield (to monitor how much she was able to get).
- Saturday Lillian passed her car seat and hearing tests. Phil placed her tube for the first time - it was also the first time we had ever seen her cry with real tears... heartbreaking.
- Sunday I had to place Lillian's feeding tube again, never fun. Luckily we had our favorite nurse back for the weekend, Kristen.
- Monday Lillian found her fingers. She likes to suck on her hand when she's hungry now.
- Tuesday Lillian had a Sleep Study, which did not go well, but luckily they are letting us take her home anyway since she will be on the monitor.
- Wednesday we FINALLY took her home.

I know that's a lot of random information, but it's nice to keep track of the time we spent in the NICU. So far all of her genetic tests, urine screens, brain scans, and other blood work have come back clear, but her general diagnosis is Hypotonia or "Floppy Baby". We may never know what's caused her condition or if it's going to be a life long struggle for her to move and coordinate her muscles, but what we do know is every day she seems to get stronger and stronger.

We have high hopes for Lillian and intend to have her involved in Physical Therapy and Occupational Therapy as well as Speech Therapy to help with her condition. She continues to be fed through a tube at home, but we are praying for her to pass her Swallow Study in early November so we can start to feed her either by bottle or breast.

For anyone that's actually gotten through this post - I give you a gold star :)

Thanks to everyone that has kept us and Lillian in your thoughts and prayers. We ask for continued prayers for Lillian that she can recover from this condition and be able to meet the milestones of her peers with continued physical therapy and lots of love and patience from her biggest fans (us).

40+ weeks... still pregnant

*How far along?: 40 Weeks

*Total weight gain: Still 18lbs from pre-pregnancy weight

*How big is baby?: Around 7lbs -7.5lbs hopefully

*Maternity clothes?: I'm mainly in pjs and maternity clothes

*Sleep?: Having a really tough time falling asleep and then staying asleep.

*Best moment this week?: Probably the pedicure I got today.

*Movement?: She's kicking my ribs right now. I think she's confused on which way is out.

*Food cravings?: Creamy pie

*Labor signs?: I'm still having some twinges and pains, but nothing exciting. My boobs have really been hurting today.

*Belly button in or out?: Still the same.

*What I miss: Falling asleep without laying awake for hours first, staying asleep, and sleeping on my stomach.

*What I'm looking forward to: Going into labor or at least being dilated more than .5cm on Monday at our next appointment.

*Milestone: Making it past my due date.

Laundry Day: Cloth Diapers

Cloth Diaper Storage

Inserts

Pockets

AIO's

BumGenius Organic One Size AIO

BumGenius One Size Pockets, Happy Heinys Pockets, Monkey Snuggles Pockets, Blueberry Pocket Diapers

COVERS

Bummies Cover

Etsy Seller Crazywonderful

Etsy Seller Olivejanes

Thirsties Covers

Random Diapers - Fitteds & AIO's

Etsy Seller Whamykidz (AIO)

Thirsties Fitteds

Etsy Seller qtbunns (AIO)

Muttaqin One Size

Etsy Seller Sparkliestar83: DiapeyDooDiaper Fitteds

24 Unbleached Prefolds