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Thursday, May 31, 2012

Bittersweet

When we went in for Iz's three month cardio appointment, we discovered she had gained just three ounces over the last month--her growth flatlined, just as we had feared it would, but Dr E said not to worry just yet because it just meant she needed a little extra help to keep growing. So he wrote us a script for some fortifier and within a day I had a pump and we were ready. The fortifier he prescribed was not available outside of a NICU but the nurse I spoke to said it would be even better to separate my milk and give her the hind milk. So I pumped and pumped and worried and pumped and stressed and pumped, trying to get enough out to separate and give her the hind milk. She was still nursing and she hated the pump so I had to wait for her to be asleep in the other room before I could pump.

She had her own ideas, though, and refused to take a bottle. She was not interested, at all. But pumping had upped my supply and she seemed to have an easier time eating because the flow was faster so I kept pumping. Sometimes I was up late into the night pumping after she was asleep. And slowly, my freezer started to fill with milk she refused to drink.

I was glad to have my little stash, though, because it took so long for me to get just a few ounces of milk--when she had her surgery, I worried I would not be able to pump enough and my little freezer stash would save the day and ensure she had enough until she could nurse again. Turns out, I didn't have to worry--every time I pumped, I got multiple bottles in just twenty minutes (there was a time limit on the pumping room....). Before she was even able to eat, I had filled a quarter of the PICU freezer. She used a few bottles in her feeding tube but she was back on the breast before long because she refused the bottle and hated the feeding tube. So I brought it all home and added it to my stash.

Today it has been six weeks from her surgery. She is gaining well and is nursing fine without me pumping extra. She still refuses to drink from a bottle and if I put breastmilk in the sippy cup we bought her, she wont touch it. If I put water in, she will play with it and drink a few sips but she is determined that only nursing will bring milk. So I gave her milk away.

It is bittersweet--so many hours and stress and effort went into all those bags and bottles of milk. The expression "labor of love" is really apt when it comes to pumping. But it did no one any good sitting in my freezer. Today, I donated it through my state's Facebook page for Human Milk for Human Babies--it went to a little girl one day younger than Iz. Her mum donated when she was younger but now is struggling with her supply and doesn't pump enough. I remember those days all too well--when S was a baby and I was working full time, I often pumped ten or more times a day just trying to eke out another ounce or two so he could have enough for the next day. I made it, but it was hard and exhausting and there were times when I just didn't know if I could do it. Eventually I got my supply back up but those months where it was down were horrible. So even though it was hard for me to empty my freezer and give away the milk I worked so hard to give to my own daughter, I am so glad it can help another little girl and another mum who is also working so very hard to give breastmilk to her daughter :)

I must admit, though, that I am sorely tempted to grab the pump and go to it while she is sleeping to get a stash going again, even though I know she wont drink it......

Wednesday, May 30, 2012

The Mommy Wars

Iz is my third child so she is my third round of The Mommy Wars (and if you don't know what that is, consider yourself lucky). It seems as though everywhere I go, either online or in real life, I run across moms who fall into one of two camps: my kid is better than yours or my kid is worse off than yours. My preference? To run into moms who do not believe they are in a competition ;) Unfortunately, I run into far more who are trying to "win." I am pround when my kids do something early.....but it doesn't make them better. Just early in one area and probably behind in another LOL. When my boys were little and I'd run across another mom who wanted to one-up me by having the better kid, I could usually be found walking away and going to play with my little guys.


I expected more of the same with Isabelle only maybe a little worse since her heart made her too tired to develop most of those "bragable" skills and she was and still is behind. I am pretty matter-of-fact about it--nope, she has not hit X or Y milestone yet and that's okay. Sometimes that is enough to stop the War in its track but I have been caught by surprise a few times and gotten the seemingly smug "oh, yeah, well MY baby hasn't done X, Y OR Z yet." Um, okay. We are competing in the other direction, I guess?

One thing that I am very grateful for is those moms I have run across who don't care who is first or last--they just care about sharing experiences and stories and offering support. My friend C who has a girl just eight days older than Iz and loves to share and worry and watch along with me as both our girls (and boys) grow and explore and figure out the world. Dear D who tells the stories of her own boys and their ups and downs. S who celebrates each belated milestone and is just happy Iz made it :) And the wonderful online heart baby community where so much love and advice and support is given. I cannot think of one time where anyone has pulled the "but my baby" card. In the heart world, Izzy's VSD is "minor", not as severe or scary as some of the other defects--but parents with babes with much scarier defects never say they have more reason to fear. They empathize, they offer encouragement, they recognize that fear is fear and we all need someone to share in that. The entire group rejoices when a baby is born and the heart is better than expected, they pray just the same for open heart surgery as they do for a cath, they offer support no matter what. While I wish no one ever had to deal with the uncertainty and worry and grief of a CHD, how wonderful that we have a "war-free zone" to retreat to for support.

Tuesday, May 29, 2012

I'll Be Leaving Now....

I was reading an online discussion the other day about the morning of surgery and how people react.  Some talked of wanting to pack up their kiddo and go home, even though they knew deep down that it was irrational because their little one needed the surgery.  But the urge is still there to just go and pretend all is well.  I was thinking back to the morning of Izzy's surgery--did I start to gather her up and take her home?  No, but I think the main reason was because I kept thinking of my Uncle Jeff.  Born in the fifties with heart defects, he never made it home from the hospital and died about a week after he was born.  I thought of my Grandmother so much in those days and weeks and hours leading up to surgery and afterwards.

The morning of surgery was such an odd mix of fear and giddiness.  I don't think the fear needs any explanation but the giddiness stemmed from such relief that it was time, no more postponements, no more waiting.  It was time.  Time for a repair, time for the chance Jeff never got, time to trust that the surgeon we loved so very much was as good as he said he was.

We had about an hour in pre-op with her before they took her back and we met with the surgeon again, we met with nurses who would be looking after us and nurses who would be looking after Iz.  We met with people I can't even remember ;)   I think, though, that the most important person at that moment that we met with was the anesthesiologist and her nurse.  They came to talk about what would happen on their end (again, since we had met with someone the day before for an overview.  But that morning was the two people who would actually be right there, watching over my baby).  The anesthesiologist nurse stayed with us most of the hour, chatting, asking questions about Iz, making small talk.  We laughed over things, she eased our fears, she got to know us.  We felt comfortable with her.  She reminded me of the wonderful anesthesia nurse I had for my surgery when Iz was born.  When it was time for Iz to go back, she carried her because Iz was already comfortable with her and was happy to be cuddled by her.  If I couldn't be there for Iz, at least a friendly familiar face was while she went to sleep.  I will be forever grateful to that nurse for keeping the fear at bay and letting the giddiness come through.  It meant that my last hour with Iz before surgery was filled with cuddles and kisses and laughter instead of tears (there were PLENTY of those after she left us.....).

Giddiness seems such a strange word for the situation but it is the best one I can think of.

Friday, May 25, 2012

Worry worry worry.....

I haven't been getting much sleep lately. The beginning of the night is okay--Iz nurses and goes to sleep, I put her down in her crib and she will sleep anywhere from two to four hours. And then she wakes, wanting to nurse and cuddle. Sometimes nightmares keep her waking, sometimes she is just hungry. But she and I are up and down all night. Last weekend, we took an impromptu camping trip--the boys LOVE to camp and we thought it would be a nice break for them. Of course, this opened up a whole new world of worry for me--will she do okay, will she be too far from a children's hospital (the answer was no as we were were just as close as we would be at home....), will this be too stressful, etc etc etc.

She loved it :p She had so much fun being outside, watching the other campers, watching the fire, going for walks in her stroller around the campground, looking at the lake and the geese. She adored being in the tent--a big ole space where she could roll around and scoot about and play :) By the time bedtime rolled around, she was exhausted and fell right to sleep on her little bed next to mine. She slept and slept and slept and slept. She didn't move or stir or wake. I finally had a chance to sleep the whole night without being woken....and what do you think I did? Woke up all the time, feeling her chest for breathing, checking on her, wondering why she slept so soundly, worrying that something would go wrong. Heh. Worry worry worry......

In good news--Iz sat up on her own today! She was playing on her blanket in the living room while I cleaned in the kitchen. I look over and there she is, sitting on her own :) She used her little arms like a tripod but she got herself into a sitting position on her own. We all clapped for her and she lifted her arms in excitement and prompty fell over LOL

Wednesday, May 16, 2012

Good day :)

The weather the past few days has been really great and we have been heading out for the park after school or after dinner and taking walks and letting the kids play.  Her stroller is one of the few places where Iz is happy--she loves to ride around in her stroller and watch the people and birds going by. 

She had a terribly clingy day yesterday and pretty much the only break I got from holding her (or listening to her scream and start to panic each time I had to set her down for things like going to the bathroom....) was our trip to the park.

Today was a very pleasant surprise--she actually sat in her little bouncy chair or laid in her crib for ten to twenty minutes at a time and played.  I got to eat breakfast by myself.  I could run to the bathroom and not listen to her tears.  I washed the dishes.  Swept and mopped the floors.  Folded laundry.  Sorted out the winter clothing and put out the summer.  There was a lot of holding and cuddling and nursing, too, but it felt good to get a few things done so the mister didn't have to do it all when he came home from school :)  It would be lovely if she would agree to something similar tomorrow ;)


Sunday, May 13, 2012

Please don't leave me...

I expected Iz to be clingy. I expected her to fuss. I expected her to want to be held and cuddled. And she has delivered on all of those. She wants to be held all the time, she gets upset when I need to set her down, she nurses like a newborn. She doesn't sleep well and wants to be touching me at all times (even better if I hold her). She gets upset when I leave her sight for things like the bathroom or the shower.

What we didn't expect? Panic attacks. We never know when they will come or what will bring them on. One day, I can put her on her playmat and go into the kitchen where she can see me and cook dinner. The next, the moment I get a foot or two away, she panics. One day, I can set her in her bouncy seat next to my chair and sit there, an hour later setting her in the chair causes panic. I can put her in the crib to sleep and the next time she wakes to nurse, laying her back down causes panic. We never know when. It begins with this low keening wail that breaks my heart, as though all the bad of the world is upon her. If I can't get to her immediately, she starts gasping, unable to catch her breath, struggling to get air in. She begins to shake, all over, and tries to cry between gasps for air. The few times we have, for some reason, not been able to get to her before this point, her cries go silent because she does not have the air to make noise, but we can see her face and body contorted with her attempts to cry. The longer it takes to get to her, the longer it takes to calm her down. She shakes and trembles in my arms, trying to breath, trying to burrow into me.

They are getting better. There are fewer of them, although I still stay very close to her. When she panics, no one, not even Daddy, can make it better. Only me. I spend a lot of time holding her but more and more when I set her down for something, she just crabs at me instead of panicking. I can handle the crabbiness--I talk to her, make sure she can see me, get her a toy to play with, get things done. But I am always close, ready to scoop her up and reassure her that I am here.

Thank God she is young enough that someday she will remember none of this.

Friday, May 11, 2012

8 months old

Iz turned 8 months old on Wednesday and had her two week discharge/three weeks after surgery checkup on Thursday. 15 lbs 2 oz! Finally doubled her birthweight!

Tuesday, May 8, 2012

Please stay in separate rooms....

Trying to keep a sick child away from the baby recovering from OHS in a small home? Stressful!

S woke up in the middle of the night feeling bad and began throwing up. So he is home from school and I am trying to keep him away from Iz so she doesn't get sick but she hates to be left alone so I am having to try and stay with her while running out to the other room to care for the sick child and attempt to keep the three year old (we had a birthday yesterday!) from completely destroying the house when I'm not looking. Oy.

This would have to be one of the husband's long days. Six o'clock, you cannot come soon enough......

Friday, May 4, 2012

When does it seem real?

For almost six months I have given medicines twice a day, have gone to countless doctor's appointments, have worried and watched as Iz had trouble breathing, felt her heart thudding in her chest as it worked too hard, heard her swish-swish-swish heartbeat from her murmur, been through surgery, daily see her OHS scar, see the numerous little wounds from her various IVs and lines, see the spots where various leads were attached and the adhesive has not yet worn off. There are numerous little signs and memories of all of it.

So why, in those first few moments after waking, do I still think it must all be a dream because surely all of those things couldn't have happened to us?

Thursday, May 3, 2012

In it 10pm and Iz is asleep in her crib, not eating.  I'm almost not sure what to do with myself.  She has been incredibly clingy since her surgery, and rarely agrees to be put down or to sleep alone.  Not that I can blame her after what she went through.  And holy mackerel, is she ever eating.  I think she is trying to make up for all of the nursing she couldn't do when she was too tired.  So it has been like one never ending growth spurt for the last week.  Nurse and nurse and nurse and nurse and nurse.  I am tired.  And thirsty.

I am sure she will wake sooner rather than later, looking for some milk and cuddles.  Until then, I'm off to watch the Big Bang Theory with the husband ;)  I may even eat ice cream :p

Wednesday, May 2, 2012

Cardiology Checkup

Today was Izzy's one week from discharge cardiology appointment (tomorrow will be two weeks out from surgery). She is healing great :) Dr E was very pleased with her EKG and her echo and says her incision is healing nicely. He said to finish out her blood pressure meds and lasix and when these bottles are gone, go ahead and take her off them. If she shows any signs of heart distress, bring her in and they'll check her over to see if she needs the meds for a bit longer but he's pretty confident that once the next few weeks of meds are over, she will be okay without them. Best of all, she has been cleared to wait three months before her next appointment :D YAY!

Tuesday, May 1, 2012

One week, two weeks

Tomorrow, Wednesday, will be one week since Iz was discharged from the hospital. She has her cardiologist appointment in the afternoon and we had better see some weight gain on this girl :p I cannot believe how much she has been eating this past week--its like she is making up for all the times she was just too tired and didn't eat all that she could have. A few weeks back, she gained in length but not weight so her cute little pudgy thighs slimmed down and she no longer had the little leg rolls. During her bath tonight, what did I see? Little pudge leg rolls! Not as big as before but they are coming back so surely that means a nice gain, right? Unless she slimmed down somewhere else so she could grow her leg rolls back :p

On Thursday, she will be two weeks out from open heart surgery. It is hard for us to believe since she is twisting and turning and bouncing and rocking and rolling and sometimes even sleeping on her tummy/chest. It seems like she should be taking it easier but our girl is ready to play hard and long. Amazingly enough, even with all of her movement and play today, she did not need painkillers until bedtime when it all caught up to her.

She is amazing :)