bug?

Josie seems to be tolerating feeds a little better as of late today. I gave her the morning off by only giving her water and then she had 2 oz around lunch and that was the first time she hasn’t retched in a week. Thank goodness. I gave her Cheerios and a banana chunk which she pretty much ate (well threw on the floor and smeared all over her face) — no retching. And as of 15 minutes ago, Brian gave her 5 oz enteral Pediasure and she seems to be feeling ok. We will see in a bit.

Me on the other hand, I swear, if I wasn’t pregnant then I wouldn’t even bother with food anymore. Between the heartburn and nausea and other things, I am not really getting to keep much in any way and I’ve been miserable for a week now. I think mine is more pregnancy related, but maybe it is a bug? I just can’t tell. But I hate food anymore. I think I may not eat until after the baby comes. Just Gatorade and broth for me… yum yum. And even that gives me heartburn.

But very pleased about Josie. However, now that she seems to be feeling better (despite she’s teething again)… she has WAY more energy than I do. Way, way, way more energy. I need to have this baby already.

Easy Button

Ever think, this is not my life?

Nope, not how I planned or even could have imagined it; pinch me now.

I know this is all because Josie’s sick, I’m sick, Brian’s always working and gone, and I’m 35 weeks and 2 days pregnant. I know it’s because my house is a disaster, I can’t remember the last time the bathrooms were really clean, and all the laundry is dirty. I know it’s because I keep biting of more than is logically sane to chew and because we are struggling financially with looming hospital bills not to mention Shands bills that are so past due its embarrassing. We haven’t paid our HOA fees in, oh, 6 months and we only bought the house last July. Our utility bill is going to be crazy this month because I have hot flashes like crazy and refuse that in that one area not to concede. I have been nauseated and vomiting for a week. Every time we feed Josie this past week (2 oz tops), she wretches and looks like she’s choking and her eyes are gonna pop out of her head and screams in pain for about 2 hours afterward. So I am starting to think, maybe not feed her? I mean, what are my options here. Then there’s all my commitments I keep making when I have no energy. Therapy 3 times a week with Josie in and out of the car and little things like my wonderful friends offering to throw me a shower to help us stock the freezer for when Mary arrives, and having to make the guest list, that my friends asked for 2 months ago, has eaten away at me so thoroughly that I know now there’s no point to actually make it. So I feel like I am constantly letting the ball drop, unable to comfort and care for my sweet daughter, worried what the stress is doing to this little one who kicks my sick stomach perpetually, freaked out that I have to endure labor, scared about the fees ($350 a day in the hospital copay), scared about if I must have a C section who’s going to take care of the new baby and Josie let alone me — and we have stairs and the bedrooms…upstairs. And Brian is working 2 jobs (1 full-time, 1 part-time) and about to go back to school to get the hell out of construction. Meanwhile all I want to do is be able to swallow a Tylenol without vomiting. Nope, not my life right now.

And yet on top of it all, there is a tremendous guilt gnawing away at me. I have my beautiful girls, a hardworking husband, a roof over my head and a bed to sleep in. We are having another girl so we are well stocked on baby goods. I have all my (cloth) diapers already. Friends offer to help when the baby arrives. The baby should be healthy (but so was Josie for about a half hour after birth and then all hell broke loose). Josie’s therapy is free. I have insurance. I even have a doula who is offering her services in exchange for me covering her gas. Somehow we always eke out money for the mortgage every month. Shands hasn’t sent anything to collections — heck I just saw my credit score and its only a few points from being good. Let’s see: I have toilets to barf in, clothing to wear usually (well hardly anything fits), my body is holding up well from not eating as well as I’d like and all the running around, but oh… poor sweet Josie.

She is the sweetest, bravest, most tolerant, patient person I know and she’s only 1-year-old. That makes me not mind so much feeling sick and uncomfortable to give her a sister to play with. There are so many things I had planned to give to her that couldn’t be. I wanted to breastfeed, nurture and hold her, carry her in a sling, comfort her and be bonded to her like only a mother could and instead the very best I could do was pump and tube feed. I hardly could bear to look at her while in the hospital I got so angry, so devastated. I couldn’t stay long by her side sometimes. I didn’t always want to go visit her while she laid there lifeless and on a ventilator. I didn’t want to remember doing her hair up in pigtails when I looked at her and saw her hair matted in blood. I didn’t want to see her chest open and see her heart frantically beating out of her chest like it was trying to get away while she was completely limp and so many confusing sounds and beeps and smells overwhelmed the tiny room. I am tired. I don’t want to be guilty, helpless, living in the past. I want to be organized, together, strong and useful. I just don’t know how and I’m so tired.

But tomorrow is another day.

RANT.

Hello world. I need to vent:

1. I am sick of people telling me I don’t know what I’m in for because 2 babies are sooooo much harder. Yes, I realize two will be more demanding mentally and physically. But let me make myself clear, two babies — if healthy — are not going to be harder than my first. Let me tell you what’s hard:

Hard is your newborn being closer to dying than living her first month of life. Hard is holding your newborn realizing that she’s suddenly not perfect and that you are a bad mother to feel like she is less than perfect. Hard is 1 pediatrician and 2 lactation consultants adamantly insisting that there is no way to breast feed your baby.  Hard is calling contact after contact in your phone trying to speak to leave messages for your friends to pray for your daughter because somethings wrong, they don’t know what’s wrong, but she might not pull through and has no pulse and finally getting through to the 6th person you’ve called and sobbing to her to call people for you because its too hard to anymore.

Hard is not holding your child for her first two weeks of life, knowing she may not live many more days and after holding her in your womb and feeling her move for 39 weeks and the emptiness your arms feel. Hard is wanting to disconnect the wires and tubes, pick up and run out of the NICU with your perfect looking baby, but knowing that would kill her.

Hard is trying to form and speak the words “I love you” just before they wheel your daughter through operating doors for a complicated open heart surgery. Hard is when you get the call from the nurse practitioner than they have made the first incision and that her chest is now open. Hard is seeing your daughter with her chest open as it is too swollen to close for a week. Hard is hating yourself for not wanting to go see your baby like that and not being able to handle being in the PICU room for more than a few minutes without feeling like you need to break something or scream. Hard is when they tell you that she gets the hiccups a lot while sedated but that it really hurts her because of her chest tubes (though they say they increase the pain meds). Hard is missing hearing your newborn cry because she’s intubated. Hard is missing your newborn cry or coo for months because she has a vocal chord paresis from surgery.

Hard is having a neonatologist feign an encouraging smile and tell you your baby has an “over 50% chance of not being mentally retarded.” Hard is even though your baby is surviving and fighting so hard to live, knowing that the baby you had planned on and gotten to know up until the birth was long gone. Hard is hearing that nearly all the things you aspired for your child can’t happen anymore. Hard is learning that Forrest Gump’s IQ is mid range of what your daughter’s syndrome’s IQ range is. Hard is reading over a 5 page list of anomalies that your child could possibly have — 200 different abnormal things. Hard is listing the ones she already has. Hard is reading web site after web site that your child has a 1 in 4 chance of later developing skitsophrenia. Hard is your child being reacted to and referred to as a syndrome.

Hard is not having a breakdown in the hospital cafeteria. Hard is when your abusive father tells you, “you need to be stronger” when you are doing the best you possibly can. Hard is hearing your mother to tell you, “you should go to the movies” while your daughter is fighting to make it. Hard is your dad complaining to you “you shouldn’t have ordered a meal when you weren’t going to eat it” because he had to pay for it — or your mother telling you that your daughter going through such an ordeal was really harder on her as a grandmother than for anyone else.

Hard is when you guess somethings really wrong again with your 4 month old when she has a follow-up echocardiogram (despite not being able to read anything but the tech’s face and tone and she of course won’t tell you anything directly). Hard is when the cardiologist tells you your 4 month old needs another immediate heart surgery and seems unsure how to proceed and tells you to watch for sudden signs of cardiac arrest and you read his face and can tell he’s worried. Hard is having to send-off your daughter for another heart surgery knowing that she is at a higher than average risk of aortic dissection — and looking up what aortic dissection means. Hard is remembering to eat anything, do anything, talk about anything for months because the depression is so bad that you are either comatose, researching complications, or sobbing hysterically for hours on end all while waiting for the bottom to drop out yet again.

Hard is stranger after stranger asking again how many “weeks old” she is when she over 6 months old or telling you how she should be or “what she should be doing” at her age and asking what was wrong with her. Hard is nosey people prying. Harder is people who just write you off as doing something wrong or being somehow inherently abnormal.

Hard is exclusively breast pumping for 16 months. Hard is watching your daughter retch repeatedly and look like her eye balls are going to pop out of her head and that she’s in so much pain and can barely inhale. Hard is seeing your child’s stoma for the first several times. Hard is seeing the scar on your daughter’s neck and knowing that every drop of blood in her 2 week old body went out that way (or in) during her ECMO. Hard is knowing they had to use two adult blood transfusions just to prime the ECMO machine because she didn’t have enough blood to circulate through. Hard is watching the granulation tissue around her g-tube get burnt off with silver nitrate for the 5th time within a month.

Hard is seeing your daughter go blue, having to grab a panicked anesthesia fellow from the hall yourself and watching him turn frantically to a nurse next door to page the anesthesiologist NOW. Hard is the nurse after that ordeal tell you that you handled the incident better than “they” did. Hard is expecting a minor cleft repair surgery and spending a week in the PICU with multiple emergency reintubations and watching her lay there paralyzed and lifeless for days knowing that she has such a wonderful little personality and that before you did this to her — picked the date and brought her to the hospital for surgery — she was perfectly happy and playing and learning to chase you around crawling. Hard is knowing your daughter has lost so much blood that she needs transfusions. Hard is seeing her blood all over every inch of her, on the floor around her hospital crib, the bedding, the pull out couch that you’ll try to sleep on later, not being able to see her face through it, her tongue swollen to 3 times its normal size because they had stitched it out-of-the-way, cut up her cheeks, and gums — seeing the blood coat and mat down her hair that the day before you had styled in pig tails. Hard is watching a consistant and perpetual slight stream of blood trickle pour out of your 1 year old’s nose for 3 weeks straight. Hard is people being taken-aback and disgusted when they see her in public like that. Hard is keeping arm braces on her for months and denying any oral contact what so ever for months and months for fear of a sudden gush of blood and another traumatic surgery.

Hard is your child refusing every drop of breast milk you ever offered orally. Hard is having your child fall so far behind in every developmental element that you aren’t entirely sure you’ll ever get to experience any of it. Hard is being so jealous of your friend’s healthy baby and feeling so guilty just because you should be happy enough to still have yours and wanting those normal things is just ungrateful.

2. If one more stranger brings up “failed birth control” or say that their babies were planned I will probably knee-jerk slug them without any thought.

***probably will go back to edit later… but for now world — this is my rant!

Playing Catch-up?

So no real BIG news, but lately life has been feeling pretty good (well I’ve been feeling pretty pregnant…32 weeks). It just seems to me that maybe Josie is finally starting to catch-up. When Josie was only a couple of months old, she was only a couple of months behind; as she got older the gap between her and her peers started getting wider and wider and then kids who weren’t even conceived when Jo was born started lapping her with walking. We’ve been ok with it, knowing from the start that not only does she have genetic reasons behind it — she’s been in the hospital for like the equivalent of 3 months not to mention she spent her first 6 months or so with a very unstable heart and no growth (weight gain) on negligible feeds and having sternal precautions for a good chunk of time! So at 19 months, ok she’s just starting to get around to walking. But she’s kinda been preoccupied with fighting for her life… what has your kid been doing? Choking on cheerios?

But like I said, the gap was growing wider and wider and I was starting to wonder when this whole “catch-up” thing I was promised would come into play. Age 3-5 years are supposed to be Josie’s golden years where she smokes everyone with her route memory and early reading ability. Where, besides scars (and maybe feeding tube), you can’t tell she’s ever been different in any way. You know before she supposedly starts to fall behind socially and academically, spatially and mathematically…

Well that’s ok Jo — Mom’s DNA checks out 100% fine and I still had social and spatial issues and math disabilities similar to what they say you have a 90% of having. Mom’s is dyscalcula and while I never knew I had it — I knew something was different about my brain and when I stumbled onto it — heck yeah. I am not dumb. And that’s what I want you to understand too. You will be brilliant — I am 100% sure of that… and that’s a bigger percentage than 90% — even I can do that math. So screw spatial abilities… I get around just fine. I just use my giant vocab when at risk of being perceived as dumb and it usually works. And with your supposed non-verbal learning disability you should be able to floor them with your speech … you know when we get to that.

Speaking of, you just started getting “da” sounds! I heard a “da” and a “dee” today a few times. And while you’re still not doing it on command, it’s coming. Your signs are just amazing. You are so polite always asking please and saying thank you and blowing kisses. Tonight you ate all of Grandma Wilmot’s pea’s one by one and then drank a little juice. You giggle and smile all the time, even when you are sick and running low on sleep. The only time you get cranky is when you’re bored! You’ve started to take chances and risks with your walking and are not even afraid to fall anymore. You don’t cry, just get up and try again — and today I was putting sun screen on you at the park and I thought you were holding onto Daddy and you were just standing. For at least 12 seconds like it was nothing. We are super excited. And YOU are ready to explore EVERYTHING! Trouble maker.

Yes, my Josie is the cutest, sweetest, really patient, adorably gorgeous little girl. And we are very proud of everything you do and how much progress you’ve made — and most of all, just so happy that you’re here with us to be loved, squeezed and kissed! Happy you are so well-adjusted after the horrible things that you’ve been through already in just a year and a half of life. Happy that you don’t have any more surgeries scheduled (yet). Love watching your face light up and sign “bubbles please” when you spot them on the fireplace mantel — and love watching you turn your head away from a spoon feed and sign “cracker” and then point to what you really want on the table (Gerber Crunchies). Jo, you finally have started pointing with your index finger too which is so cool. Anytime you hear a new sound you look at us and ask “what?” in signs. Plus you are totally mimicking Mom by saying “yeh” after questions now. As in the sound “yeh” not just nodding. Yes we finally seem to have started a catch-up phase!

You are so smart and thoughtful and you take everything in. I am so proud to have you for my little girl and can’t wait for you to be a big sister and show Mary the world and how to be a sweet girl. Love you.

Easter / crib / food / walking

Yesterday was Easter. We had an awesome day. We colored eggs first thing in the morning bc we had some setbacks boiling the eggs (I know I know) and anyway vigil mass was about 3 hours long (Jo was at Grandmas!) so Saturday dying eggs just didn’t pan out. But Sunday morning we sat at the table and Josie really enjoyed it. We let her color on the eggs with crayons (even though it didn’t really show up) and then she dropped the eggs in (with some help). And mom really liked that the dye stayed in the mugs and not all over Jo! The only spill had been when I put two eggs in one mug and the water overflowed. But anyway, no biggie, and now we have about 18 eggs to use in Easter pie which I sadly never got around to as it was also planned as a Saturday activity. Now its tonight’s dinner plan. Looking forward to it all the same!

About two weeks ago, we transfered Josie to her crib in her room (the loft just outside our bedroom). She is adjusting well going from Mommy and Daddy’s big bed and really doesn’t cry or protest. We only ever put her down when she’s already pretty worn out and sleepy, so she generally just lays there and whines and bit or cries for a minute and rolls over and falls asleep. On “bad” nights, she will only lay there if we hold her hand through the crib rail, so we sit next to her bed and she drifts off after 20-30 mins. Not too shabby. I have to say though that I miss her snuggling in the bed, but we still have cuddles at naptime in my bed. Live for nap time! In the mornings though, she wakes up around 7ish which is when she is used to getting a tube feed so Brian just goes ahead and plops her in bed with me and feeds her and heads to work. Then I maybe, hopefully, get an extra 30 mins of sleep (on good days its more, but life doesn’t usually work out in favor of extra sleep now does it?). But when we get her up in the morning, she hugs us with a death grip and doesn’t want to let go. So hopefully she is adjusting well to sleeping in her “big girl bed”. I know she will have to transition to a real “big girl bed” still but I don’t see that coming for a few years yet. Her crib still swallows her — she still sleeps sideways in it! And I don’t foresee her being able to crawl out anytime in our near future. We’ll play it by ear anyway.

Yesterday at Publix, a lady walking down the aisle started shaking her head at me (as every 3rd person does who sees me waddling with Jo on my hip) and said “oh you poor thing,” which totally caught me off guard bc I wasn’t having any trouble. I had Jo on one hip and a coke in the other hand looking for Gerber snacks while Brian got some cold cuts at the deli. Not like I was navigating on crutches or something. Whatever. But to the lady I must have looked pitiable; she went on to say “well things like that happen” which I assume she meant my pregnancy and what she thought was Josie being younger than she is because everything thinks she’s so much younger. Boy am I sick of that. Everyone thinks Jo is about 9 months old. I mean, ok that’s the size and development level she’s near but you can’t assume everything. And of course as the lady walked away she threw me a pity, “You’ll survive.”

I think I am the only person not worried about “surviving” this new baby. I am not sure if it’s that Josie hasn’t uncovered a terrible twos type temperament, but I am not entirely sure she is going to be that bad even when she does. She’s never gotten anything when she wanted and understands the word “wait” which I think is pretty good for a 19 month old (almost in a few days). She’s pretty darn patient. She communicates decently. She acts very wise for her age. Which I prayed a lot for over our first stay at Shands when I was told she may be mentally retarded. So I prayed, well if she isn’t “smart” let her be “wise” which sounds contradictory, but I know people who aren’t necessarily quick but they come to surprisingly wise conclusions. I mean, take kids in general. Little kids. They might not have a total grasp on how the world works, but their faith and trust is phenomenal. Jesus tells us to be like little children. And I think it’s better to be apt to being taken advantage of than be bitter and cynical. Give me naivety any day. I just want to make sure we can watch out for Josie if that does become the case. I am just babbling but anyway, just saying, I think Jo is going to be pretty wise. Smart too.

In the world of oral skills, Josie is just doing amazing. In purees she is taking over half a serving container in a sitting. But more importantly — totally willingly. She still makes the funniest faces when we feed her though. And she loves little things like noodles and breads and does really well. She also has been letting us brush her teeth ever since we got an Elmo toothbrush. She sings “la la la la la la” at close to the right pitch when Elmo’s world comes on. Last week I even heard a couple “da das” but she’s been holding out since that day (since we told DaDa about it lol).

As for walking, she as always makes progress (and I hate to sound terrible but its the slowest progress you can imagine like being stuck in quicksand, but I will take forward steps regardless). I still predict she might even take a few solo steps by the time the baby is born! But she pretty much guaranteed is not going to be “walking”. Its going to probably be another couple of months before her first steps. Then another couple – few months to fine tune (if its anything like crawling). Then she’ll probably be 2 and a half by the time she figures out how to run, which might be interesting if Mary is around that same stage. Possible. I’m just rooting for a second baby who doesn’t require therapy 3-4 times a week to advance. That she sticks around the average range for development. We will see when she gets here though — but I just don’t know how I will juggle having to coach 2 kids through every tiny step of development at the same time. Whenever I hear parents complain about, gosh, how darn fast their kids are progressing and how they wish they’d slow down, I hate it. No, you don’t want them to slow down really bc not only is it emotionally difficult to realize that your child is behind (whether or not you try not to think about it or worry about it) its TIME CONSUMING! Not just going to therapy but doing double feeds — oral and enteral — and they both take forever and then all the therapy play and exercises and homework you feel guilty if you don’t get everything in. I mean, Jo sleeps, what, 14 hours a day? That doesn’t leave that much time to do everything, and personally I am just a bit worn out between that and carrying around her sister, which I will add that we conceived with the idea that a sibling would be the best thing we could ever do for her — developmentally and especially socially as she is supposed to have plenty of social issues. Anyway, I am getting so much hassle about this baby and nothing but negative comments, even if they are meant to be constructive warnings. I can’t take one more stranger shaking her head at me or saying you poor thing or WORSE what everyone seems to think is appropriate and somehow not rude as hell — implying that we made a mistake in conceiving Mary. I always make sure to point out that we tried for 6 months before she was conceived and that really paints a shocked look on their faces. They usually only muster an “oh” and shut up or say something like “you’re brave” and I say something like, “Well we came so close several different times to losing Josie …and after that we weren’t sure if we would be able to have any more healthy children without defects — you never realize how precious life is until you experience something like that — so when we learned we could go on to have healthy kids, we decided to go for it. Crazy or not. And besides, it’s going to be the best thing for Jo to have a sibling, someone to help watch out for her and be there for her when we can’t and help her navigate life from a different perspective we can’t offer.” Then the person we have randomly met at the park swings or grocery store or Target really shuts the heck up. lol.

So as for walking, might be a little while yet — BUT Josie TOTALLY walked only needing one hand for support today. Thats new! She’s still really wobbly, but she didn’t fall down. Can’t wait!

<3