CHOP Update

After a fretful night with several unusual wake-ups for Adelyn - because who doesn't like a good hotel party? - we headed to CHOP (Children's Hospital of Philadelphia) bright and early on Thursday morning feeling excited, nervous, optimistic, anxious.

We've heard so many amazing things about CHOP, and I have to say, they absolutely lived up to their reputation during this first visit.  Every single person we met with was both incredibly knowledgable and personable, and made us feel like we were their most important patient.

Dr. Vanderver (the #1 leukodystrophy doctor in the nation and the reason we went to CHOP) is nothing short of phenomenal.  She explained that myelin (the stuff that makes up our white matter in the brain - it's like the insulation on the wiring of your brain) is not fully developed in humans at birth.  That's why other animals can get up and walk within a few hours, and human babies cannot.  In fact, our white matter continues to develop until we are 25 years old.

In Adelyn's case, there is a distinct abnormality in the development of her white matter.  However, because she is so young, it is rather difficult to diagnose - babies just have so little myelin as it is.  So, she felt that it was really too early for our initial hospital to diagnose leukodystrophy conclusively.  With only one MRI at only 4 months old, it is hard to tell if it is DEmyelination, or delayed myelination.  The doors basically opened to a lot more possibilities of what Adelyn's disorder could be, although our primary focus does continue to be leukodystrophy.

She feels that the type of disorder we should focus on right now is a leukodystrophy called Aicardi-Gouitieres Syndrome (AGS).  They did a spinal tap on Adelyn to measure a wide range of diagnostic information for a variety of disorders, some of which will tell us whether we are going in the right direction with AGS, or if we should move on and keep looking at other possibilities.

A spinal tap is similar to an epidural, and since they use local anesthetic, isn't very painful.  However, it's important to be very still for the procedure, so they have to hold babies down.  They asked us to leave for the spinal tap because babies typically become very upset, and it's harder with parents worried in the room.  We came back 20 minutes later and they told us she was one of their very best patients and that she hardly cried until they started to put her onesie back on -- she's not a big fan of getting changed! ;)

Several of the non-leukodystrophy conditions we could be looking at ARE, in fact, treatable.  It's important to note that treatable is very different from curable, but would be an incredible blessing.  AGS also currently has a clinical trial for an experimental treatment medication going on right now.  The results of our spinal tap (expected in 2-3 weeks) will tell us whether we should continue on in the direction of figuring out whether Adelyn could qualify for this treatment study.

We also saw a wide range of specialists: nutritionist, therapists, speech/language pathologists, resource specialists - who gave us a lot of helpful information on ways we can best support Adelyn's development.  We were there from 8:15am - 5pm with very little downtime, and it was SO good to just be surrounded by a team of people who cared as much about finding a diagnosis and helping Adelyn as we do.

Okay, I know I'm a long-winded writer, so here is what we need you to pray for, and it's okay if you just skimmed the nitty-gritty above:  :)

1. Pray for a speedy diagnosis.
2. Pray for a treatable disorder.
3. Pray that we reach our fundraising goal for a service dog quickly so that we can get on the waiting list to get our pup (and prayers work even better of course when they come with action - please share our story and fundraising link with others! https://www.plumfund.com/pet-fund/adelynstribe-4-paws-4-adelyn).

I just don't even know how to put into words how grateful we are for all of you.  We are touched that so many people care about Adelyn.  We believe your prayers are truly making miracles happen.  We love our tribe deeply.

Our strong little girl is ready to take on whatever comes next!

4 Paws 4 Adelyn

We are so grateful for everyone who has been praying for Adelyn since her brain disorder diagnosis at the end of January. Your prayers are helping us move mountains, and in our darkest hours you shine God's light so bright that it is impossible for us to forget He is with us every step of the way! 

"For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, 'Move from here to there,' and it will move, and nothing will be impossible for you." Matthew 17:20

We were recently blessed with the acceptance of our service dog application - this dog will be specially trained for Adelyn from its birth to be able to detect seizures and alert us when they happen (we always worry we will miss one while she sleeps, when they happen most often), assist her with motor skills (balance for walking, retrieving objects), and provide guidance assistance (Adelyn's brain disorder also affects the optical part of her brain, making it difficult for her to process what she is seeing and thus functioning as a visually impaired person even though her eyes are healthy). This service dog will be life-changing for her and for our whole family. 

Of course, the training that goes into a service dog does have cost associated with it. A well-trained dog from a reputable organization costs between $30,000-$60,000 (1-2 years of food, shelter, vet services, and trainer's salary). 4Paws for Ability covers a large portion of that cost, but asks families to participate in their own fundraising, and raise $17,000 towards the cost of the service dog.

Anything you can contribute towards this goal will be so incredibly appreciated. Click here to view our fundraising site!

Please read more about the organization we are using here. 

Whether you can make a donation, or simply offer us up in prayer, we are so grateful to each one of you for caring and for being part of Adelyn's Tribe!

LeukoSEQ Study Update and Hope

I'm a little behind on this update, partly because life is a bit busy lately, but mostly because writing this post is harder than I thought it would be.  We got into the study!  We've prayed for this, you've prayed for this, and we got in!  Such joyous news... but it comes bittersweet.

About 2 weeks ago, I got a phone call from the contact person with the study.  They told me that they were "tentatively" accepting us, but there was a condition.  The doctor saw something in the MRI that made her suspicious of a possible misdiagnosis -- she thought the white matter abnormalities may have been caused by a virus called CMV that I could have had while pregnant that just has mild flu-like symptoms.  This can be tested with a simple blood test, and while it is still brain damage, it is not progressive and not fatal.  I don't know if I cried harder the day we got her diagnosis, or after that phone call at the thought of the possibility of hope - of a miracle.  And so our prayers changed, and we pleaded for this to be true.  We started researching, and so many of her symptoms aligned with CMV.  I knew this was it... I mean, really, truly knew it.  We got Adelyn's blood drawn and started the wait for the results.  And we didn't tell anyone.  Because hope is SO good, but it's also pretty damn scary.

We got the results earlier this week that Adelyn tested negative for CMV.  And with that, we are in the study.  I was crushed.  I felt like I had finally started to find my strength before, and now I was suddenly back to the teeny tiny person I was a month ago.  Being in the study was exactly what we thought we wanted, this should have been good news, and it is, but it didn't bring the elation we expected.  I've had a lot of people telling me I'm strong lately - but I'm just as strong and as weak as all of us are in times of adversity.  In this moment, I was weak.  And I was sad. And I was angry. 

And in my weakness, tiny me yelled to Mike, "THIS. THIS is why I didn't want to have hope.  This is what I was afraid of.  It hurts SO much all.over.again."

But the crux of it is this... you can't NOT have hope.  There are risks in having hope, but the risks of losing hope are so much greater.  And Mike reminded me that Hope is a lot like Love.  Opening yourself up to it makes you vulnerable, but if you don't, there is so so much beauty and wonder you will miss out on.

Do not be afraid—I am with you!
I am your God—let nothing terrify you!
I will make you strong and help you;
I will protect you and save you.
(Isaiah 41:10)

And I have to say, the Hope that I let enter me... it crushed me in the moment, yes, but it also changed me.  I'm embarrassed to admit that I had taken defeat with our initial diagnosis.  Yes, I love her, yes, I will do anything to help her and protect her.  But she has leukodystrophy, and it is progressive, and it is fatal.  That's it.

When we told our Pastor the news of her diagnosis and asked for prayers from the church, his response included these words: "We will be sure to ... celebrate the gift that she has been, the gift that she is, and the gift she always will be - leukodystrophy be damned. Nothing will ever change the fact that Adelyn is a beloved child of God..."  I was touched at his words, and cried reading them.  But I wasn't quite ready for them yet.  Because at the time, leukodystrophy had damned me, not the other way around.

I think I needed that moment of "false" hope to remind me that I need to have hope.  Leukodystrophy only damns me as much as I let it.  WE decide what controls our lives.  WE decide what actions to take day in and day out.  WE decide what thoughts we choose to entertain. And now I'm ready.  Leukodystrophy be damned.  And as long as we remember that WE have the power to control how we react to our own personal plights, WE will always win.  The outcome doesn't affect that truth.  Maybe she'll beat the odds, and maybe she won't, but we will give her the best life imaginable, and we will fight with every ounce of our willpower, and we will think positive thoughts, and in that - we. will. win.

This week I am a new me.  I'm remaining realistic about her condition.  I know her "normal" will not look like other children's "normal."  But I'm not about to take leukodystrophy lying down.  That hope lit a fire in me.  Doctors are wrong all the time.  Medical miracles really do happen.  People surpass life expectancies.  Not always, maybe not for us, but I'm not just going to accept that and go about my life like there's nothing I can do.  We are in physical therapy, we are in occupational therapy, we are applying for a service dog, we are traveling to Philadelphia for a neurologist who is the best in the country for this type of disorder, we sent our MRI discs to the Netherlands for a second opinion from the best doctor in the WORLD for leukodystrophy.  We will seek new treatments, explore every avenue that is open to us, and find the ones that are closed and break down the doors.  I don't know what the outcome will be.  I don't know what her future - our future - looks like. 

But I have Hope.


 

Blood work for the study is done - we're in! 

And even mom and dad aren't too old for cool bandaids!

Initial Genetic Blood Work

Adelyn's initial blood work for the most likely types of leukodystrophy came back negative. Her clinical records and MRIs were sent off to a genetic specialist who selected which of the known types of leukodystrophy fit her case and tested for enzymes that would match those types.  While on one hand we are relieved that we now know for sure it is not the most severe form, Krabbe (life expectancy 18 months to 2 years), we are also left with a lot of questions since all the ones tested for came back negative.  A lot rides on that information, but only 50% of leukodystrophies ever get diagnosed.  We are really praying that we don't permanently stay amongst the undiagnosed. 

We found out about a study called LeukoSEQ at Children's Hospital of Philadelphia, which has one of the nation's leukodystrophy centers and is run by one of the top doctors in this field, Dr. Vanderver.  We applied for the study, they've reached out to our hospital to have her records forwarded to them, and now we are just waiting to find out if based on her MRI and clinical data she will qualify.

This is why qualifying for this study would be such a big deal:

We currently know and understand approximately 2% of the 30,000+ genes that make up our DNA.  A regular geneticist, through the typical route of diagnosis, can order a DNA test called Whole Exome Sequencing (WES).  This test takes 4-6 months to get results back, but it pulls apart and studies that 2% of genes we understand and checks to see if there are any matches to known leukodystrophies (or any known genetic diseases for that matter).  All currently diagnosable genetic diseases are found in this 2% -- MS, genetic heart conditions, etc.

If we qualify for the LeukoSEQ study, however, they will do something called Whole Genome Sequencing (WGS).  This would analyze 100% - every.single.one - of Adelyn's 30,000+ genes AND both Mike's and mine (free of cost as it is funded by a research study).  They will look at the 2% we know, but also at the other 98% that we don't yet understand, because they are searching to learn more for the sake of research and developing knowledge in this field of DNA and leukodystrophy.

The person who told me about this study from a Leukodystrophy support group had previously been a part of this study, and they found a new type of leukodystrophy for her daughter, and were able to identify that she and her husband were in fact carriers, whereas if they had gone a standard medical route, it would have always gone as an undiagnosed type and they would have never known if it was specifically a hereditary genetic type of this disorder or if it had been a spontaneous mutation.

The study also takes many many months to get results (and there are also cases where it still comes back inconclusive), but we feel this is our best option right now.

Prayer requests:

1. Short-term: Adelyn will be accepted into the LeukoSEQ study.
2. Long-term: We will have a conclusive diagnosis for her leukodystrophy type.

Thanks for your continued prayers, love, and support!  I'm amazed at how many people are following our story and have to say -- we have one pretty badass tribe!

"My tribe is HOW big??? Wow!!!"

"That makes me so happy!"

 "Okay, let's all pray.  I'll start."

We'll Get Through This Together

Where do I begin? How does a mom write this kind of post? We've been able to fill most of our friends and family in at this point, but I guess I'll start with the story of what got us here...

A few weeks ago, Adelyn had a brief "twitching"episode - maybe 5 seconds - when waking from a nap. About a week later, another. A week later, and one more. We knew it was odd and immediately started Googling information on the topic -- it seemed to fit the description of something similar to the hiccups; harmless. I brought it up at her 4 month well-check though, just to be sure. The pediatrician agreed it was likely nothing to get worked up about, but wanted us to follow up with a neurologist to rule out anything more serious. We had an appointment scheduled for Tuesday. On Sunday, she had another "episode" in the morning. This one lasted much longer (1-1.5 minutes) and was more intense. Something wasn't right. I realized how glad I was that we had made the neurology appointment, and was even able to get a video, so I felt good that the video would be able to help with a diagnosis. That night, we put Adelyn to bed. I happened to glance down at the monitor after she had fallen asleep and see that it was happening again - this time there was no question it was a seizure. We threw some clothes in a bag in case we got admitted overnight and headed to the hospital.

We spent 4 nights and 5 miserable days there. Our poor baby was hooked up to a 48-hour EEG to monitor her brain activity. The "pack" holding the wires was so heavy she couldn't hold her head up without support. We met nurses, and techs, and pediatricians, and neurologists, and an ophthalmologist, and the list could probably go on. Initially, the EEG results were coming back okay. On Wednesday, we had her MRI. She had to be put under for it so that they could make sure she would stay still. That evening, the pediatrician came by and said he had some bad news. The MRI was abnormal. He started talking about white matter and myelin, and getting services to help her, and I had no idea what it meant, but we started to realize... this isn't good.

The next day they told us the geneticist would be in soon to talk with us -- I was confused and my heart was beating in my chest, but I kept my cool. Okay, the geneticist, sure, we'll talk with her. We're good. We're cool. They have to cover their bases right? I'm not sure what bases those are - a geneticist??? - but it's fine. She's fine. She's totally fine.

White matter. Leukodystrophy. Tell us your family history. Running tests. Bloodwork will be sent off. Laboratory. Any questions?

Um, no. We're good.

And then they left and we were ready to turn to Google. What was that word she used? Luca? Luko? Ah - I found it! Leukodystrophy - white matter, yes that's it!

Leukodystrophy is a group of rare genetic disorders that affect the white matter of the brain. It is progressive, and the patient will worsen over time. Physical and intellectual abilities will deteriorate. The rate at which this happens depends on the specific disorder within the broad category of leukodystrophy. This disease is fatal. When symptoms present themselves in infancy, that is typically because it is a more severe form. For children diagnosed before they are a year old, average life expectancy is 2-8 years.

Thank God Adelyn is asleep right now. I'm crying, sobbing. Mike is crying. We're holding each other. I'm just so glad she's asleep, because she shouldn't see her parents like this. This isn't US. Not OUR baby. It's surreal. And so real.

When you hear someone else's story like this, you always say, "I just can't even imagine how you must feel." But really, you sort of can, can't you? I know I used to, before it was me. Such a deep, unfathomable pain it takes your breath away. What you're imagining, it's pretty close to what it is. Here's the only part you're missing, or the part I was missing anyway when I used to think I couldn't imagine what it would feel like: I had no idea how much the joy would hurt. The sadness, the pain of hearing your child has a terminal condition, that part I knew would hurt. But when Adelyn giggles and makes me laugh at her silly coos, it shatters my heart into a million tiny pieces that I'm constantly having to glue back together so that I can keep giving her my whole heart, no matter how many times it keeps breaking. Because she deserves to have all of me for as long as I can give myself to her - she'll never know my heart breaks for her, she'll never know how many times I've glued myself back together. She'll only know that I'm here, and I love her, and I will make myself whole for her. We will keep giggling and laughing and playing.

I kept asking Mike when we first got the news, "How are we going to do this?" But we really both already knew the answer. You just do it. There's no how. We may not always LIKE the hand we're dealt, but we can DO it.

There is something that has given me so much comfort over the last week. I believe - and have always believed - that God hand picks babies for their mommies. Even people who don't have a good relationship with their parents, I really believe that God had a purpose in putting them together, that they needed each other in some way they may not even ever understand.

"Before I formed you in the womb I knew you, before you were born I set you apart..." (Jeremiah 1:5).

And so all I can think, over and over again, is that God had this beautiful, delicate soul. He loved her so very, very much, and He needed someone to take extra special care of her. He knew it would be hard, and so He searched and searched, and out of all the billions of people in the world, He chose Mike and me to be Adelyn's mommy and daddy. I know that she belongs to Him more than she even belongs to me, and I am so honored that He chose us. I used to thank God for her every night in my prayers, "Thank you for a happy, healthy baby." Now, my prayer is, "Thank you for Adelyn. Please help her to be healthy and strong. Thank You for sharing her with us, for choosing us. I promise we will take good care of her, we won't let You down. I know we can do it, with Your help."

And it's not just us that He chose. God chose a support network so strong for Adelyn that I have been blown away by YOU. The calls, texts, Facebook messages, visits, flowers, fruit, meals, delivered groceries and pantry items, cookies, meal delivery kit services, matching mommy and me leggings, gift cards, blankets, toys, rosaries, coffee, donuts, cleaning service... I'm sure there's more I'm missing here too- I'm crying writing this, because it has been SO much. You are pouring your love all over us and it is so good and so healing. When I had to tell my dad the news of her diagnosis, he started crying, and through his tears he just kept saying, "Okay, baby doll, okay. We're going to do this together. We're a family and we're doing it together." All of you - every kind thought and prayer sent our way - I just keep hearing, "We'll get through this together."

Psalm 56:8 says, "You keep track of all my sorrows. You have collected all my tears in Your bottle. You have recorded each one in Your book." I know so many of you have shed tears for us, with us. Your tears are just as real and raw as our own. And God is collecting them all. Every tear drop is a silent prayer falling down your cheek, and we can't thank you enough. Our tribe is big and beautiful, and our baby girl is surrounded by so much love. We'll get through this together. And I hope you never have to go through anything quite like this, but when life throws you a hardship, I hope you know that we'll be with you and we'll get through that together too.

In the ER

Moved to a room and admitted as in-patient

IV all hooked up

Our happy girl even with all the poking

Hooked up to her 48 hour EEG to monitor brain activity

Hugs from Grandma 

Smiling with Pepaw - the wire "pack" is so heavy it's hard to hold her head up! 

Poor sleepy baby after anesthesia for the MRI 

And best of all - so happy to be back HOME

I know so many of you love us and are praying for us and want to know how she's doing. I will try to post periodically with updates. As of right now: 

1. We are awaiting further blood test results being run by a geneticist in hopes of getting a specific diagnosis for the type of Leukodystrophy Adelyn has (please pray for results, as about 50% of leukodystrophies are never able to be diagnosed, and a lot rides on that information). We should get this information in a week or two.

2. Adelyn will begin physical and occupational therapy to help her meet milestones and in hopes of slowing future deterioration of physical/motor development.

3. She has a follow up neurology appointment in a few weeks (once blood work from the geneticist comes in) to discuss next steps.

Newborn Notes

The newborn days are spent in a pretty foggy haze, and it really does fly by!  Here is a list of tips, advice, must have items, waste of money items, etc. while I still have one foot in enough to remember and one foot out enough to have the time, energy, and clarity to write this.  I hope it's helpful to at least a few new moms, and myself whenever it's time for baby #2 (not any time soon - but it'll come someday!) and I can't remember a damn thing about how things went down during this time with baby #1. I'm long-winded (I'm an English teacher, what do you expect?), so you're probably best off skimming for the sections of interest to you. Unless of course you just want to soak in my delicious story-telling format and read every last drop - I wouldn't blame you for that either.


Baby carrier -- Do some research and figure out which one you think you'll like best, but DEFINITELY make sure you have a baby carrier of some sort.  Strap that baby on and go about your business.  It's a little harder to do said business with your baby screaming in your ear, but a hell of a lot easier than trying to hold the screaming baby with your own arms, which leaves you unable to even pee for potentially hours on end if you have a fussy baby like mine - baby carrier = pee all day long if you like, and occasionally get quite a few other things done as well.  Another plus is that if your baby HATES tummy time, carrying them COUNTS as tummy time -- it helps reduce the risk of plagiocephaly (flat head syndrome - the reason you see all those babies in cute little helmets that you obviously would prefer to avoid if you can - and which is actually incredibly more common than you may realize), and helps build core and neck strength that they get from tummy time. As someone who became obsessed with trying all kinds of carriers, here are my notes on the different ones I tried:

  --The Ergo is a fantastic, super easy (but pricey) option.  I love how easy it is to put on, how comfortable it is, and how much support it provides.  Oh - but don't use the newborn insert!  It's actually unnecessary, newest recommendations for baby wearing suggest legs out from day 1, and that thing is HOT for both you and baby.  By the way, the link is to the one I WISH I had with "cool air mesh" - I just have the regular one, and baby carriers in general get quite warm between you and baby's body heat!

  --The Moby is my personal favorite (doesn't have to be Moby brand - any good quality wrap carrier will do the same thing for you) - the catch is that it takes a serious learning curve and you really have to be willing to not give up.  It's intimidating at first to wrap that long piece of fabric and get it right so that the baby isn't hanging down by your knees after 10 minutes.  But if you are determined, and willing to practice, and watch a million and one YouTube videos on different techniques for wrapping, this wrap will change.your.life.  Seriously.  I almost gave up the first week, and I'm so glad I didn't. It's a lot like learning to tie your shoes -- Remember how hard that was at first??  No??  That's because you practiced and then it became so easy it was like second nature!  Same for the Moby.  :)  It is by far the most comfortable wrap (for both of us), I love that I can actually leave it on all day and just slip her in and out, it will grow with us as she grows, and best of all - I learned to breastfeed in it!  Let me repeat that: I learned to breastfeed... on.the.go!  Now, I still prefer to get cozy with my little snuggle bug and enjoy the bonding of a more comfy nursing session, but when you're on the go or really need a hand free moment, this is Life Changing, my friends.  Give me a call or come on over when you're ready and I will totally help you out with this!  As a side note, I have also heard that the Solly is a very comparable, but cooler, option due to the lighter material it's made out of - I can't fully recommend having never tried this brand though.

  --I have a Ring Sling that I also quite like, but it doesn't provide nearly as much support and hurts my back, neck, and shoulder after longer periods.  Great for a quick, easy throw on carrier for just a short time though - and it's best pro is that it is really very easy to nurse in, and the long tail doubles as a cover.  I like having it as a spare, but if you only want to invest in one carrier (or two), make it the Ergo or the Moby.

  --I also tried a Mei Tei carrier (somewhat of a cross between a structured carrier like the Ergo and a wrap carrier like the Moby), and I didn't like it at all.  It was a pain in the ass like a wrap carrier, but without all the added benefits.  Maybe I gave up on it too quickly.  Or maybe it just sucks.  Either way, I wouldn't recommend this type of carrier.

Lactation Consultant -- Make this woman your best friend!  Issues with latching?  Painful latch?  Hurting nipples?  Sleepy nursing baby? Schedule an appointment with your LC.  Problems that you're not even sure seem breastfeeding related?  Baby cries a lot?  Gassy?  Spitting up frequently?  Possible reflux?  See your LC!!  I kept making appointments with my pediatrician for my colicky newborn, putting her on meds, trying elimination diets, all to no avail, and at 11 weeks it dawned on me to at least give the LC a try and see if she could help - she identified a problem the pediatricians hadn't noticed instantly and I left with a new, happy baby.  I think people don't take enough advantage of lactation consultants, and really, really, you should (not the hospital ones either - they are often not as good as independent LC's or ones that you can get through your pediatrician's office).

Playard -- I didn't realize there were options other than a standard "pack n play" when we registered, so I searched Pack 'n Play and put one that looked good on our registry.  That thing is a PAIN IN THE ASS to set up and is SO heavy!  There are WAY lighter and WAY easier versions that are much better for travel if that's what you plan to use it for like we did. We ended up going with the Guava Lotus Travel Crib (just recently bought this so now we have this AND a pack and play - if I had a do-over, we would have just started with this), but I've heard great things about the Babybjorn Travel Crib too and think we would have been happy with either!

Infant Massage -- Gassy baby? YouTube "infant anti-gas massage" - there are tons of videos for super quick, easy to do massages. I started doing a quick massage routine at each diaper change (>1 minute) and she would pass gas almost every time I did it.. It really helped!

White noise -- LOUD is key here.  I actually find our iPad on a docking station is the loudest option and there are a million YouTube videos of hours of white noise, so if you already have an iPad, this is a totally free way to go, and will probably be better than a lot of the ones you can buy anyway.  Someone told me that it is rock concert-loud in your belly, so don't be afraid to crank that white noise up, and I have found this to be soooo true... loud white noise = longer sleeping baby.  Don't waste your money on some sweet gentle sounding one - if you do buy one, make sure it has good volume.

Socks -- Get 1-2 pairs of Zutano brand socks/booties in a good neutral color (go with the 6 month size - these fit Adelyn at a really young age due to the way they actually snap around the ankle and gives her plenty of room to grow into them as she gets bigger).  These things STAY ON like nobodies business and are so warm and snuggly.  Then get a 6 pack of Robeez brand socks - these are more regular, everyday socks, and they stay on quite well too.  Zutanos and Robeez are expensive.  If you'd rather buy other, cheaper socks, I'd recommend just throwing some money in the garbage first and then breaking down and buying the Zutanos and Robeez anyway ... seriously, the rest are all a complete waste of money, they fall off so quickly they're not even worth putting on.

Bottle Drying Rack -- We have a drying rack by our sink. Marketing somehow convinced me I needed a special, separate drying rack for bottles. Turns out the bottles can MIRACULOUSLY sit on the plain one too and I don't need two drying racks taking up space on my counter...

Bottle Sanitizer -- Do you have a dishwasher? With a "sanitize" option? Yeah, me too... Get a dishwasher basket for small parts and save your money on the special sanitizer.

Baby Advice Books -- Do you already have some of these? You do, don't you? Okay, then you need to listen very carefully to this next part. Go now, quickly, to get your books. Pick them up... Are you following? Now light a match and start a bonfire with these books (outside recommended). You and your neighbors can have a great little party with the bonfire and those books would have made you crazy because they all contradict each other and you're probably always doing something wrong - except you're not. You got this, mama, follow your instincts and ask your pediatrician (or your mom) when you have questions. This article about sleep advice says it perfectly!

Snuza Movement Monitor -- Maybe you're a totally, laid back mom who doesn't worry about anything (ahh we laugh, do such moms really exist?), but for me, the Snuza Hero was SUCH a worthwhile purchase. I also love that this one vibrates to attempt to rouse baby along with alarming the parent in comparison to other similar devices, none of which have that feature to my knowledge. It gives me so much peace of mind to know she's breathing and happily sleeping at night as long as I don't hear an alarm. Now apparently there is also a setting where the monitor beeps with every breath the baby takes so you can actually "hear" her breathing all night long. I don't know how on earth a constant beep all night long would help you sleep better and if you feel like you need to turn this feature on, you be crazy!

No Bake Energy Bites and Lactation Cookies -- Make a wholeeee bunch of these and maybe some of these too before baby arrives. Put 2-3 in individual ziploc baggies, put the individual bags in a gallon freezer ziploc, and pop them all in the freezer. When you need a quick snack midday or at 2 am, just grab a pre-portioned bag out of the freezer and you're set with a healthy snack! Personally I love both of these recipes frozen, but you can also pull a bag out a little while before you eat them if you prefer them to thaw first - it doesn't take very long.

Bows -- Okay, now this one is important. I want you to take a look at your financial situation very carefully. Now, spend every single dollar you can spare in your budget on bows for your baby girl. You won't regret it, trust me. (Go to eBay for super cheap options!).


There are so many products and so much advice - including mine ;) - readily available that it can be a bit overwhelming ("a bit" - hahaha) before baby arrives.  But seriously, the best best BEST thing is about to happen to you, whether you're doing this for the first time or the fifth.  So get the stuff you think you need to prepare, and then remember the most important thing for you to focus on is just loving on that new little life you just made, because the only thing they really need is YOU - and you're going to rock this, mama!

To the Grandmother of My Baby

Dear Mom,

Today is the day before Thanksgiving, and I have a lot to be thankful for this year.  I have a loving, supportive husband, and we welcomed our first baby into the world 11 short weeks ago.  I have food to eat, and a home, and good health.

And I have you... not just my mom anymore, but the grandmother to my baby.

I knew from the second I found out I was pregnant how lucky this sweet baby would be to have you to call grandma.  You love on her, and spoil her, and tell her how special and good and important she is.  I knew that you would.  I knew that you would do that SO good.

But there was something I didn't know yet.  I didn't realize how important your new role as my baby's grandma would be, not just to her, but to ME.

When I need advice, you will always answer my questions and try to help me problem solve, and I'm so grateful for that.  But often you don't give me advice.

You listen, you support me, you show me that you trust me to make decisions that are right for my daughter.  When I whole-heartedly go on and on about the importance of an "eat, wake, sleep" schedule, you nod in agreement and tell me what a good idea that is.  And then the next day when I tell you that schedule is the stupidest thing I have ever heard and it clearly does.not.work. and I need to let her eat and wake and sleep in any order she may choose, you nod again, "That makes so much sense, sweetie, you're doing a good job."

You let me tell you in the tiniest, most insignificant detail, how you must hold her, how to soothe her, how to care for her.  You, a woman who has raised three children of your own, ran a day care out of your home for years, and has taught in an elementary school for two decades, allow me, a first time mom who loves her baby but doesn't have a clue yet what she's doing, to tell you what to do.  And you act like each and every detail is not only incredibly important, but also absolutely brilliant, repeating back steps to me to make sure you have it right and haven't missed anything. What a humble woman it takes to listen to an inexperienced mother tell you what is best without feeling the need to remind me that you already know - that you've been there, and done that.

Do you have any idea what that does to a new mom's self esteem?  Do you know how it makes me feel?  Do you realize that even when I'm overwhelmed by a colicky baby and feel like I don't know what to do, you make me think I can DO this?  What greater gift could a grandmother possibly give her new grandchild than a mom who has confidence in her ability to care for this precious life?

So, this Thanksgiving I want you to know that I'm thankful for all that you do, Mom, and I'm even more thankful for all that you are.  The kind of thankful that makes your heart explode because it hurts so good, the kind of thankful that's too big for words.  But words are all I have, so I hope you know that even though the words are small, the feeling inside them is earth-shatteringly huge.

Thank you. I love you.

Love always,

Your Baby