Life with little Leah

Reading another new mommy's blog this morning reminded me of how incredibly difficult Leah's first few weeks at home were. She nursed for hours and hours on end. On the rare occasions she slept in a location other than in my arms, I dreaded the moment when she would open those big blue eyes because she inevitably would also open her little pink mouth in an ear piercing wail, demanding another marathon nursing session. I was physically in pain both from a difficult delivery and from aches and stiffness that comes from sitting in the same position for hours on end. I was exhausted from sleep deprivation, and, I admit it, resentful of this little person demanding every scrap of time and energy I had (and then some) and also that Derek was getting off easy because all she ever wanted was to nurse. I cried every day, wanted to switch to formula every day. I didn't expect this. Then I read The Happiest Baby on the Block. This book changed my life. He advises new parents to see 0-3 month old babies as fetuses. I know that sounds terrible and my mother was horrified when I told her about it, but it helped me put Leah's demands into perspective. She had just come from a world in which she got fed and snuggled all day, every day for nine months. Now, there I was, expecting her to understand how to deal with "full" and "hungry" cues, to have a schedule, and to be ok with not having access to nourishment and snuggles all the time. For her, being nursed and cuddled twelve hours a day was a dramatic reduction! She didn't know how to be a "human" with times to eat, sleep, and play, she had to learn all of that.  

Thankfully she did... and it *only* took her five weeks! Now at almost ten weeks we have a schedule of sorts-- she wakes a seven for her medicine, eats, plays in her gym (really she just kicks around and smiles... but it's so cute!), gets a bath (her absolute favorite thing in the whole world!), and naps in her swing for 3-4 hours (I never could have imagined this in her first five weeks!), eats, then the rest of the day is kind of touch and go, depending on her mood... BUT we have a good morning routine down. It took us a long time to get here, not only with the constant nursing, but also her 3 + doctors appointments per week, so I'm proud of us... both of myself for beginning to learn how to put someone else's needs before my own, and of Leah for beginning to learn how to be a human being. : )

 Leah has a hemangioma. "oma," that sounds like cancer, right? Well, no, it's not cancer, but it is a tumor of the blood vessels. It grows very rapidly for the first year or so of a baby's life then fades away with 100% resolving by age 10. Hemangiomas are usually more of a cosmetic issues than a medical issue, but when they affect the eyelid (as Leah's does) they can cause severe astigmatism, glaucoma, and blindness. Also, they can be more than surface deep and can affect vessels in the heart, neck, and brain.

We saw the pediatric opthomologist two and a half weeks ago and just as I hoped, he took this rapidly growing birthmark very seriously, gave us a diagnosis, and had us into to see the chief of the dermatology department and hemangioma and vascular malformations clinic at Children's within 48 hours. She immediately started Leah on Prednisone for two weeks to keep the hemangioma in check while she got an MRI and saw a cardiologist for an EKG to make sure it wasn't affecting her heart, brain, or neck. To make a long story short, she had to go twice in one week for two MRIs. On the first one the radiologist decided not to use contrast, thought he saw a narrowing of a vessel in her neck, and had us come back 48 hours later for another MRI with contrast. They had an excruciatingly difficult time starting an IV. They tried unsuccessfully in each hand and foot (while she's screaming and I'm sobbing) before they finally got one in her wrist. As a side note, holding my five week old baby down and trying to comfort her while strangers are poking her veins with needles was one of the most horrifying and painful experiences of my life. The worst part was that she was the one feeling the pain and I was the one making her go through it. She didn't have a choice. I hate that.

Anyway, she does have a narrowing of a vessel in her neck, but it's not a huge deal. It's just something to watch over time. Her brain is fine, as is her heart. SO, since she got the all clear, she is set to begin her treatment, which weirdly is the beta blocker Propranolol. It's a newly discovered (three years old) treatment for hemangiomas with an impressive success rate-- much better than prednisone with fewer side effects-- and should have this thing gone within a year. Since she is so little, though, she has to be in the hospital for 48 hours on observation just to make sure it doesn't mess with her heart rate or glucose levels. She'll start on Monday!

Alright, so I mentioned that Leah wasn't born problem free. For all they scared with down syndrome, heart conditions, etc, during the pregnancy, she (praise God) has none of those, but she does have a large, vascular birthmark covering about 20% of her face. At the hospital the pediatrician told us that it was likely the type that disappear within the first year or two and that it shouldn't be anything to worry about. Unfortunately, that's not the case. Over the last three weeks, it's gotten much darker and thicker, especially over her eyelid. The particularly worrisome part about that is now she can only open her left eye about half as wide as her right eye. Naturally, I'm totally and completely freaked out. Her pedi referred her to a plastic surgeon at Children's, and after about a week of calling both the pedi and the plastic surgeon trying to make this appointment happen, I finally get one-- for the end of freaking April. Not. Good. Enough. After going back and forth calling the pedi and the plastic surgery clinic (apparently they like for all communication to come from the pedi and can't do anything like change an appt time without an ok or "urgent referral" from the pedi, which for some insane reason, they would not give me. Do they want me to wait until she can't open her eye at all?), I finally spoke to someone competent from the plastic surgery dept, who told me that my ped office had  miscommunicated the problem to her office and that she indeed should be seen by someone asap. So both she and the pediatricians office referred me to the Ophthalmology department at Children's where I finally got an "urgent" appointment for Tuesday. FINALLY. I'm hopeful that even if the Ophthalmologist isn't able to do something, perhaps he will at least be willing to give me a coveted "urgent referral" to plastics.

I thought that all the worry about the baby during the pregnancy would end with her healthy birth, but it seems that's not the case. The primary concern, obviously, is her eye and vision, but (vainly, perhaps?) I'm also worried about the strange looks people (even some friends and family members) give her.. like they don't want to say anything, but they're obviously wondering what's wrong with her. Now it just hurts my feelings. I never ever ever want her feelings to be hurt. It hurts me just to think about that. She's so little and oblivious now, but she won't always be. I dread that day when words and looks can hurt her.

But thankfully she was born during a time in which doctors and laser treatments can help her and I'm just relieved to be starting that process. In the meantime, I think she's beautiful and perfect.

Happy Birthday, Leah

 Funny story: Just hours after my last post, I started feeling really light contractions which progressed into really painful contractions that got up to seven minutes apart through the night... then suddenly stopped by morning. Not to worry, though, they picked up again Friday afternoon/evening and I spent Friday night in absolute misery. Essentially contractions felt like someone stuck a knife into my belly, ripped out all my internal organs, threw them on the ground, and stomped on them... repeat every X minutes. The natural birth I planned quickly became just a cute, naive notion. Women gave birth for thousands of years without epidurals, so it can't be THAT bad, can it? Surely I can do it. Yes, yes it can and no, no I cannot. So after being in labor for basically two nights and a day I went to the hospital at 7:30AM Saturday morning where I gladly accepted the epidural. It was the best decision ever. I have no regrets, nor do I feel bad for not being able to make it without it. I was able to talk to Derek without ripping his head off, visit with our families, and even take a nap. I progressed pretty quickly because by 2:45 I was ready to push... and that's when I started freaking out. Until that point, it was just so nice to have relief from the pain, hang out, see family, etc. When the nurse said it was time, the reality of everything hit. I was actually going to have a baby. ohmygosh. I pushed for 45 minutes, then baby's heartrate started dropping, and all at once there were 15 nurses in my room screaming at me to push and all of a sudden they tossed this wet screaming little creature on my chest, said "It's a girl!" (WHAT?!) and immediately took her away to make sure she was ok. Meanwhile, the OB (not mine, but her partner.. boo!) was pushing on my stomach SO hard to get my bleeding to stop while I'm crying hysterically, half from pain, half from worrying about my baby and the sheer craziness of everything going on.

Finally they give her back to me and she just looked so funny... puffy, coneheaded, and smush-nosed... isn't that horrible that my first thoughts on looking at my baby were that she's funny looking? I'll blame it on the blood loss, because looking at her "mere moments after birth" pictures now, I think she's the cutest little thing I've ever seen.

So I had a sweet little girl when I was anticipating a boy and she's wonderful and perfect and I love her more than I can say. She was, however, born with a problem for which we're looking into treatment, but I won't dwell on that now. I have a perfect little baby girl.

41 weeks + 1 day and still no Little One. Good news is that if he or she doesn't decide to be born by Tuesday, he or she will be evicted. Five more days, kiddo!

Although I'm tired of waiting, physically quite miserable, and *ready* to have this baby, part of me is just not ready and honestly terrified. I've got six days max of not being a parent, not being responsible for the health, safety, wellbeing, and future of another person. Yikes. Yep, I'm scared of screwing up my child. Thoughts like these keep me up at night. I feel like I'm too young, too unprepared, too self-centered.

Then, once in a while I hear about a family who has fallen apart because of domestic violence, infidelity, or even just immaturity and selfishness and then I realize that the best thing I've done for my baby is to have picked a good dad for him or her. I don't worry about him not being there for the baby, about our marriage failing, or about him not working his tail off to provide for us. That frees me up to focus on irrational fears... haha. Seriously, though, I'm so thankful for him and our relationship and that I don't have to worry about becoming a future guest on Maury.