My sweet Charlotte is 5 days old today. I promise I will write her birth story soon, when I get the chance between feedings, laundry, diapers, and all the emotions that come with having a 5 day old.

Oh the emotions. There are the typical weepy, overwhelmed, exhausted feelings- sure, I expected those. But there are the ones I didn’t expect, the ones that have made me deal with what happened two years ago, when Grayson was a newborn.

Charlotte had a checkup yesterday with the pediatrician, to check her weight and just make sure everything is ok- it is. The nurse took her temperature and I asked what it was. When she said “98” I started bawling, and couldn’t stop. I was having a major flashback of Grayson’s first checkup when his temperature was 94.9 and at first the nurse thought something was wrong with her thermometer.

I’ve been crying about it off and on ever since. Charlotte wakes to eat, is breastfeeding like a champ, is peeing and pooping regularly, and is basically doing everything a healthy newborn should do.  This has made me incredibly happy, amazed, and relieved, but also so, so sad.

I’m sad because I never really realized how not okay Grayson was from the very beginning. He didn’t eat because he couldn’t, not because I wasn’t making milk. He was so weak and little and his brain never told his body to wake up to eat. And he wasn’t eating enough to wet his diapers, so he got dehydrated and cold.

I am so sad for that little baby, the one who no one knew was fighting an awful disease from the time he was born.

So today, while I’m celebrating and relishing the beauty and miracle of this newborn…

I’m also grieving for this one.

Grayson has a little sister!!!
Charlotte Faith Baker
Born January 20, 2013
11:30 AM
7 pounds, 1 ounce
19.5 inches

She is perfect and we are doing great!

Thanks to all who checked in with us and prayed about Grayson’s genetics appointment this morning. Unfortunately, the testing did not give Grayson a genetic diagnosis of Leighs, which is very disappointing. However, like I said before, this is what I was expecting to hear, so it wasn’t devastating. We are now at the end of the road as far as genetic testing goes, at least until the science gets more advanced. I am really at peace with this; it’s been a long two years of searching for answers, and it will be nice not to have to wait for and wonder about results anymore. And Grayson does have a clinical diagnosis (the geneticist said he is textbook Leighs/Mito) and I am hopeful he will be able to have access to the clinical trial drug for his disease sometime soon. Currently the drug is only available to those with a genetic diagnosis, which is the main reason we wanted that diagnosis today.

In other, happier, news, I had an OB appointment today and I am at 3 cm already! Without being TMI, my body is screaming that I am READY for this baby to come OUT. My doctor thinks Baby C  will make his/her appearance either this weekend or early next week! (And some are confused about the “C”- both our girl and boy name start with C).

So it was a big day around these parts- I will keep you posted!

As of yesterday, I am 37 weeks. My sweet friend J texted me yesterday while we were on the way to church- “Happy Full Term Day!” She’s great. And I can’t believe I’m here. I can’t believe there’s an actual, fully formed little baby moving around inside me, and now we are just waiting for him/her to decide to come on out and meet us.

I am ready. Last week, I was so stressed and was feeling pretty horrible, and I wanted to evict this little one for physical reasons. Now, I’m just excited. Bring on the craziness!

I do want to stay pregnant at least through Thursday. If you could keep Thursday in your thoughts and prayers, that would be much appreciated. We are meeting with a geneticist to hopefully find out that Grayson has a genetic confirmation of his diagnosis of Leighs. Right now, he has a clinical diagnosis, but if we get genetic confirmation, there’s a good chance he will be able to get on a clinical trial for a drug that could really help him. I’m not hugely optimistic this will happen Thursday (the genetic diagnosis), but remain hopeful.

I’ve read several bloggers’ musings on birth this week, specifically how their first birth experiences were completely against what they wanted and had planned, and how those experiences left significant emotional scars. Fortunately, I had a very good experience with Grayson’s birth and am actually very much looking forward to giving birth again. However, I do have several aspects that I hope go differently. Last time, my water broke so I was induced when I got to the hospital. I’m hoping I can experience more “natural” contractions this time, and hopefully labor some at home, although I will still get an epidural at some point. If possible, I want to do delayed cord clamping and skin to skin right away.

Breastfeeding is my biggest anxiety-inducer. I do have emotional scars from last time, and there’s the point that we won’t know if this baby is healthy or not when s/he is born. I am planning on giving it my best shot, working with a lactation consultant, and watching wet diapers like a hawk. Beyond that, there’s not much I can do. If it works it works, and if not, well, formula will be just.fine.

But for now, we wait. And pack the house for movers next week. And do laundry, clean up vomit, and fit in a few last therapy sessions and doctors appoinments. And I’m trying to enjoy these last few days or weeks of pregnancy, because I know I will miss it when it’s over.

Thank you all for your kind and encouraging words of support on yesterday’s post. I’m feeling a lot better about things today. Physically, I’m exhausted and hurting, but as I was packing teeny tiny newborn outfits in pink and blue in my hospital bag today, I regained the perspective that this is all for a good cause. Because after all, I am having a baby. Another child that I will love as much as I love Grayson? Wow, that’s going to be amazing. And that certainly overshadows any stress, fear, or pain I’m feeling.

And, as my bloggy friend Stef pointed out in her comment, what I’m really stressed about is the unknown. I have no idea how the next few months (or years, whatever) are going to play out, but they will. When people say “I don’t know how you do it” when referring to Grayson, I always say that I don’t have a choice. Sure, I don’t do it perfectly, but I’ve learned a ton over the past 2 years about a lot of things I never would have dreamed I would be dealing with. And it will be the same with having 2 kids- I’m smart, I’ll figure it out.

And as several other friends pointed out, the guilt I will feel is probably unavoidable, but the good news is for this new baby, our crazy life will he his/her normal. Doctors appointments, therapies, vomit, seizures, tubes…it won’t be anything s/he will bat an eye at. And I’ve heard so many times that siblings of special needs kids develop incredibly soft hearts and amazing empathy. I hope that is true for Baby C.

Grayson had a good day today. It was his first day back at school and he was obviously excited to see his teachers (and must have been soaking up all that learning because he didn’t take a nap- oy). When we got home we spent some time rocking, singing and giggling; I’m soaking up every second I can with my sweet boy, while it’s just us for a few more weeks.

Life is so hard sometimes. Not that it’s not good- it’s just hard. Sometimes I feel ungrateful or weak for admitting that I am so stressed, and that I wish things would be a little easier. I wish I didn’t base my “goal” date to stay pregnant until after a big doctors appointment for Grayson. I wish we didn’t have to move, or worry about money so much, or wonder when Grayson’s next emergency will be.

We spent the night in the hospital Thursday night. In the big picture, it wasn’t a huge deal- Grayson’s GJ tube came out. I don’t know how it happened- I was rocking him and smelled formula, so I checked his tummy and the tube was about 3 inches out. Since it was late in the afternoon by the time we got to the ER, we had to wait until the next day for the procedure (under anesthesia) to be put back in. We got home about 26 hours after arriving. I’m so thankful he wasn’t sick and it wasn’t anything more serious, but it was still a whole day in the hospital. With our only child.

The next time this (or something more serious and requiring a more lengthy hospital stay), we’ll likely have two kids. Two kids that will need round-the-clock care. Starting Friday night, Baby C really started making it clear that s/he is HERE and is demanding attention. I think s/he gained about a pound overnight. I feel HUGE, my back hurts, other body parts hurt, and I’m having more and more moments of “get out of me” thoughts.

Anyway, life goes on. And it will. It’s just going to be SO much more complicated now, and especially in emergency/unexpected medical situations. I know we’ll always have help- we have a nurse who is great, my mom is working part time starting this week so she can help us, and I have a huge network of friends and people who are willing to do/give us whatever we need. But I know it’s still going to be hard to leave one child to care for the other for possibly days at a time. I know guilt is not/will not be the appropriate emotion- but I know it will be there.

I already feel guilty for the amount of time we’ve had to board Hank lately- and he’s a dog. He acted out with some other dogs at the kennel this weekend, and I know it’s because his life has been turned upside down- he’s lost his 3 canine sisters, he sees us boxing up our house, Ryan and I are obviously stressed…poor guy.

I know someday we’ll have a little relief from the stress- it just seems right now it’s one thing after another. And yes, life is really, really hard.

Cue sad violins…

I’ve written before about how I love being pregnant. And I do. And I will certainly miss it in a month when I no longer am.

But.

Oh my word, being pregnant kicked my butt today.

First of all, I am a lot bigger (and feel like I am getting bigger by the day) than I was the first time around. Little Peanut Grayson measured weeks behind my whole third trimester. I never got that “get this thing OUT of me I am so uncomfortable” feeling. I’m not quite there, but umm…so this is what it feels like to be huge, tired and yes, UNCOMFORTABLE. Seriously, I would give anything for a night’s sleep on my stomach without waking up 42 times to go to the bathroom.

And my patience is ZERO. I’m blaming the hormones, because otherwise, I would qualify myself as World’s Worst Mother today. I honestly cannot remember a day in Grayson’s life where he drove me this insane. I told him I was going to sell him to the circus. And it’s not like he was any different today than any other day- waking up way too early, whining, whining, whining, refusing to nap except for 30 minutes in the arms of my friend at our PLAYdate (and then proceeded to scream while he wasn’t sleeping). And carrying his awkward, stiff little body everywhere is starting to hurt. Sigh. Praise the Lord for his 6:00 pm bedtime- it didn’t come soon enough tonight!

And I’m going to have TWO of these little rascals? Oy.

But it will be ok. Right? RIGHT?

The Pioneer Woman cinnamon rolls I ate for dinner (don’t judge) helped a little (thanks MIL). And sneaking in on this little dude while he sleeps-well,  he’s definitely worth days like this.

What a year it has been. It has no doubt been a year of uncertainty, hope and anticipation, as well as year of fear, grief, surprise, and joy.

And those questions I asked a year ago have, for the most part, been answered. We know, in general, what is going on in Grayson’s body, although we never know what symptoms will manifest each day and if we’ll spend that day going to a playdate or checking in at the ER.

We now know that Grayson’s life on earth will probably be shorter than most, but we pray for as many happy, pain free years as possible for our little guy. We know his future may consist of more surgeries, hospital stays and doctors appointments, but know it will be filled with love, hugs and kisses, music, and family.

No, Grayson will most likely never walk, but we aren’t ruling out the possibility of miracles. Walking, talking, and all the other milestones that seemed so huge a year ago are barely a blip on my radar screen now. I just want him to be here. And happy.

And yes, we will have more children (at least one, anyway)- that question answered in late May. It wasn’t exactly answered the way we planned it would be, with careful analysis of genetic testing and possibly medical interventions to ensure a healthy baby, but we are trusting that God knows better than we do what’s best for our family.

Baby C will be here soon- very soon. I’m 35 weeks pregnant today. I alternate between such conflicting emotions, sometimes within the same breath it seems. I’m anxious and well, terrified, of taking care of Grayson and a newborn at the same time. I’m so excited to hold and cuddle this little one on the outside, but also know I will grieve not being pregnant. I want to know if we’ll be bringing Baby C home in pink or blue, and how Grayson will accept and relate to his little brother or sister. I won’t have to wait much longer for those answers- 5 weeks or less!

2012 taught me to live intentionally, with a plan, but flexibly, because plans always change. I’ve learned to question everything, especially related to modern medicine, because doctors are human and don’t always recommend what’s best for my family. 2012 reconfirmed over and over and over that people care, and that they pray, and that they are so generous. I learned a hard lesson in 2012 that sometimes the decisions that are right and are best are often the most difficult to make and live with. And 2012 taught me the words stamped on a bracelet given to me by a precious friend for Christmas are in fact, true. I am “stronger than she thought”.

I look forward to 2013 with mostly optimism and hope. We’ll be in a new house soon, a fixer-upper that we plan on truly making a home for our little family of four. Grayson is stable and happy right now, and for his sake, I hope that medically he has a calm and uneventful year. I hope that even as my life gets exponentially busier and more complicated, I can continue to foster relationships that have become so dear to me in 2012.I work so hard at my role as mother, but I want to be a better wife, daughter and friend and give back somehow to those who have given me so much.