Sunday, July 31, 2011

Today was a shit day. I was a crappy mom, and nothing went right.

I had a complete meltdown this morning. I got out of bed, forgot to feed Ellie, fell asleep on the couch while Jakob watched five hours of tv. I fed him, remembered LATE to feed Ellie, lay down on the living room floor and cried. I cried for two hours. Jakob kept telling me not to cry, and finally went in to wake up Jason and said "Mommy is crying". In Jason's sleepy state, he thought Jakob said that I was dying, and he flew out of bed thinking that there was something seriously wrong with me.

My appointment with my expensive psychologist is on August 8th, and my urgent appointment with reproductive mental health is who knows when...

I was not okay. Ellie even started crying while I was crying, the weirdest little cry I've ever heard. It almost sounded like she was laughing.

Jason came and sat with me, amid the piles of blankets and crumpled up tissues, and just held my hand while I sobbed and tried to explain what was going on with me. I said a lot of things. A lot of things I didn't mean, but boy do I ever need someone with a degree to talk to me, BADLY.

I managed to finally pull myself together, and we went out. I needed it, I couldn't manage to do it alone. Thank heavens Jason is off tomorrow. I have a list ready for tomorrow. I will follow it to the letter, and I will be fine getting to the time where he wakes up.

I made a good dinner for Jake, and he had a shower and went to bed. He wanted me to read another story, but I told him that I needed some Mommy Alone time, otherwise tomorrow might be another crying day. He told me "Mommy, please, I don't want you to cry. Look at me, I'm a good boy, I want you to be happy. I will sleep so you no cry". I held it together until I left his room, and then I cried some more.

I will never, ever understand how I managed to be so incredibly blessed with that boy. He is miraculously kind, caring, loving. He is everything. I feel like I am failing him.

Thank goodness we're going into the day shift rotation this week, and I have help in the evenings.

Crap, I forgot to feed Ellie again.

Why can't she just cry or fuss, or anything to let me know I forget??

Friday, July 29, 2011

Jakob was very generous a shared his very special tattoo stickers with Ellie. He said "look, mommy! We can cover up ellie's tubie!"
I wonder where I will be when I get the phone call. What I will be doing, who I will be with. Will it be in the morning, in the afternoon? Will I be distracted, or will the kids be sleeping, and myself fully able to absorb the information relayed through a crystal clear connection? Will Jason be home? Will I be alone?
Yesterday, I wasn't entirely positive that Ellie had PWS. But, for some reason I decided to look up a term that was in her chart at the hospital, that I had never looked up before. It seemed insignificant at the time, but curiosity got the better of me, so I googled it. Hypoplastic labia minora. It has to do with underdeveloped girl parts. I didn't add anything to the search query other than those three words. One of the first listings was for differential diagnoses. I clicked on that, and was mildly surprised to see that the only congenital diagnosis they offered was PWS. That solidified it in my mind. I am set. I have a plan of action, a letter drafted for friends and family, all I need is the phone call.
On August 21st, just over three weeks from now, there's a fundraising walk in support of PWS, put on by the Foundation for Prader-Willi Research, called the One SMALL Step walk. We are going. We are going to start fundraising the minute we get our diagnosis. I am so, so excited that there's an event like this close to where we live, with others who have gone through exactly what we're living.
I set up a page for Ellie, which is already live, but until we know for certain, it feels strange telling people about it!

Thursday, July 28, 2011

I wish I had more time. I start entries, and leave them as drafts, because I get caught up in real life, and by the time I get around to posting them, I would rather start a whole new entry.

I will get around to that, someday. Maybe one morning when I wake up at 5am, and decide not to go back to sleep.

Ellie had her weekly check-up today. She's adjusted to 6.5 weeks, I think. She weighed in at 3440 grams, or 7lbs 9oz, and measured 19 inches. Still clinging to her curve, which is nice. She's still ng tube fed almost every meal, although she likes to have a few milliliters by bottle.

Yesterday, Jakob wanted to help me sew. We decided to make a play mat for Ellie, and he decided on the layout.

Here's the rough layout:

And here it is in action:
We honestly do not need a single extra blanket, but if my son wants to do something fun, like sewing, with his mama, I am certainly not going to deny him the experience!

He had so much fun arranging the fabrics, that he did another layout while I was sewing the black, white and pink one.
I have no time to sew it any time soon, but here's the layout. He was very proud :)

Friday, July 22, 2011

Ellie is three months old today, and she will have been home for a month tomorrow. Time is flying.

She didn't have a very good weigh-in this week, I think it was an average of 14 grams a day, so we still get to keep our weekly appointments.

I see good changes in her her tone and activity level, although the ng tube definitely needs to stay a while longer. As much as I hate it, it is a huge help to her.

Thursday, July 21, 2011

Ellie-belle will be three months old on Friday. Three!

Because we've had her home for almost a month, and because we have watched every available episode of Go Diego Go! and Toy Story six times in a row, I seem to have mastered the art of taking bothh kids out. Jake *needs* play time with other kids, otherwise he turns terrible. So, we go out.

Can I just say, GROW UP adults!!! The adults are worse than the kids, and I have homicidal thoughts when the mothers at the park cluster together and avoid my un-perfect baby. Fuck you for sitting in your huddle, blatantly staring at us, and avoiding eye contact with me completely. Way to set an example for your kids. What's that? You don't want to encourage your kids to play with my perfect son, because his sister has a tube coming out of her nose? What the fuck is wrong with you?????
And, if it isn't that we are made to feel like Ellie has the plague, or some sort of curse people feel compelled to avoid, it's the people who say "what's wrong with your baby?", or "what happened to your baby?", before even saying a "hello, nice looking baby you've got there" first.
If people would have the decency to just not ask what's wrong with her, if they had some tact, I would gladly say "Hi! This is Ellie. She had a rough start, being born the size of a 28 weeker, and she's still trying to figure out her feeding. That there is a feeding tube, no it isn't a breathing tube, and she's making progress every day. It is too bad our modern incubators can't give them everything a baby needs, sometimes these wee things need a little time to catch up :)"
But, so far, in a month of outings, no one but the janitor of a medical building had the guts to tell me my baby was lovely and not ask anything else.
I am not liking this one little bit.

Sunday, July 17, 2011

Jason and I have talked a lot about what will happen to our lives if we get a postive PWS diagnosis. For him, work will stay the same, but for me, I have a feeling everything is going to change. I'd originally planned to open my shop up again in the fall, but if Ellie-belle does have PWS, that means she will need round the clock care pretty much forever. Lots of appointments, specialist visits, etc... Not to mention, right now she's on her 3 hour feeding schedule, and that looks like it could continue a very long while if she continues to be unmotivated by food.
We've had the feeding tube back in for 5 days, and her oral feeding skills have declined. She just doesn't WANT to bottle feed. Lazy-bones. She's still little, though. Maybe by the time she reaches double digits things will change.
We've been talking about what life might be like if I don't work. It means a substantial decrease in our income; really substantial. So, we had a chat, imagined being in the Sahara desert living like Bedouins. From that perspective even telephones and televisions - things that "everybody has" become optional. We called our cable provider, and cancelled our service, luckily at no penalty. Hubs even managed to negotiate a $10/month savings on our continuing phone and internet service. To go without cable for the year saves us $540. Can you believe that? For the crap programming, we've been paying over half a thousand dollars a year! SO not worth it.
We have done a couple mega-cooking sessions. We buy and cook in bulk, complete meals that are supremely easy to prepare the day-of, and lend themselves well to being taken to work for lunch. Cooking this way, saves us a substantial amount of money every month, and the added bonus is that Jay doesn't eat out. Eating out, was costing us $350 a month. So far, with two major changes, we've managed to save ourselves a lot of money.
Check out this cook book, it's amazing!

Friday, July 15, 2011

Why does feeding have to be such a battle? really isn't a lot. Just over 2 ounces. But, Ellie struggles day in, day out to finish each meal.

I fed my niece a 2 ounce "snack" this evening. She guzzled it in under 5 minutes. No cheek support, no chin support, no frequent burping to keep her awake, no 45 minute torture as I beg her to just take 5 more mls...

I live in a world of self-constructed ignorance. I spend as much time as possible away from home when my husband works, because I need a distraction. I can't think about Ellie and where she is at; it destroys me.
My niece is six weeks younger than Ellie, but two weeks older, gestationally. I think reality hits hardest when they are together. My niece is advanced, she is huge, she eats like you wouldn't believe, she is alert, she smiles, she coos and she cries.
Ellie sleeps, has periods of quite alertness, has trouble eating and goes back to sleep. She doesn't gain properly, she is so floppy, she rarely makes good eye contact.
I KNOW I should not compare them. But, it is impossible; especially when people don't know that Ellie probably has a genetic defect, they judge, they compare. Ellie isn't normal.
At least she is pretty. Every single person who has seen her, friends and strangers alike, have commented on how pretty she is. And, she really is.

Thursday, July 14, 2011

I honestly never thought *I* would ever, ever have problems breastfeeding a child. With my son, I had ao much, and I never even questioned what I would do if I were put in the position of not being able to do it. I admit, I looked down on people who could breastfeed but chose not to.
This time around, I have next to no supply. The 9 weeks Ellie was in the NICU, I pumped and pumped and pumped and stored every drop she didn't drink (well...take through her tube).
We have been home for almost a month and I have hardly anything left in my frozen stash. I pump every three hours, religiously, and today got an ounce a session. She takes almost three ounces a feed. I feel like a failure.
We are so brainwashed to think breast is best, in whatever form, that pondering the notion of supplementing with formula hurts me to my core.
I rest a lot, drink tons of water, pump according to schedule and take a million fenugreek tablets a day. Nothing.
No change, except perhaps for the worse. I have probably enough to get us to our next doctor appointment. If I can't somehow boost production by then, I will admit defeat and ask about formula feeding.

Wednesday, July 13, 2011

Today has been hard. Ellie was up all night, starting feeds at 1.5 hour intervals. Needless to say, I started the day exhausted.
We had a doctor appointment this morning, and Ellie failed in the weight gain dept, so it is back in with the ng tube, and back to the rigid 3 hour feeding schedule.
And someone I am very close to is dying... she will be gone by morning, and I can't be there. Sigh.

Tuesday, July 12, 2011

Ellie's horoscope for the week

For a while, things can only get easier. Watch, though, for residual problems. The enemy may almost be conquered, but small pockets of resistance remain. It isn't time to be triumphant, nor should you panic each time you encounter an awkward indication. You have turned a corner. There may now be a delay while you await your reward, but it is on its way. Put your fears and anxieties aside while you proceed with cautious optimism. As for any damage, it will start to heal soon...

Monday, July 11, 2011

My beautiful baby girl continues to amaze us daily. She has been off her NG tube for a week now, a whole week! They told us she would be on that thing for MONTHS... goes to show you that even the smartest doctors can't predict what a preemie can do.

At just over 11 weeks, Ellie is starting to come around, and is acting just like a newborn would, if they were just a couple days old. She roots, she feeds, she sleeps, she has active alert periods, she's just late, that's all.

Wednesday, July 6, 2011

Well, she grew! A lot, in fact, 7 oz in 6 days!!
As of Monday, she's been off her ng tube, she decided that herself, so I am rolling with it. Hope the good progress continues!

Monday, July 4, 2011

I had the great honour, last night, of meeting our niece, Linnea Laura. She is stunning, with incredibly bright eyes, porcelain skin and a mess of brown hair. She is entirely delightful, and massive compared to our little Ellie, weighing 3591grams, only 80 grams smaller than Jakob was. I didn't realize it at the time, but I held Linnea as Amber was moving from the nursing chair (Linnea is an absolute champion nurser!) That I was the first other than Amber and Brad to hold her. I felt terrible when my mil asked if she could hold her, as I was passing her back to Amber. But, incredibly honoured that Amber trusts me. Gosh, holding that perfect little bundle made it easy to imagine the two of them, Ellie and Linnea, growing up best of friends. Although they live a fair way away from us, I hope we will see them often, and that Amber and I can be close. I would love that.
Our sweet Ellie is just over 10 weeks now. TEN WEEKS!

At our last check-up, she weighed 6lbs6oz, not quite what they wanted, but at least gaining. She isn't really sticking to her curve, but we're working on it. I've completely given up on breastfeeding. It's too stressful, wondering if she's getting enough, knowing she's not strong enough to suck effectively, and not being able to boost the milk with formula. So, these days it's bottle and ng. Bottling is a huge deal! Yesterday, she did all the day time feeds by mouth, and one in the middle of the night, because she was frantically eating her fingers (a first!). Today, she had the 9, and 12 feeds by bottle, a tube at 3, and a full bottle at 4:30pm, because apparently she was hungry! She started crying at me. She seems to only cry when she's hungry, and even though it had only been an hour since her feed finished running through the tube, she finished a whole bottle. I'm not going to worry too much about that, hungry is better than not! I wish we could ditch the ng tube. People are SO rude about it, they stare at her, and on more than one occasion someone has full out asked me what is wrong with my baby. Mind your own business, people!! Obviously there is something wrong with my baby, she is floppy and she can't feed reliably enough to sustain herself so she's got a feeding tube. UGH. It's so aggravating.

She's also awake a LOT more. She wakes for all her feeds, at night we don't set an alarm anymore, she wakes us up when she's ready. I don't think Ellie's tone has improved any, maybe a little, but I'm trying to work on her. We stretch, massage, tickle. She thrives on the interaction.

As time goes on, the more sure I am that she has PWS. I am jumpy when the phone rings, in case it is genetics calling to tell us the results. I'm scared for that phone call, and anxious for it at the same time. I just want to know already.