November 13, 2009

Where did the month go?

Posted in Habits, Health, Itty Bitty Baby News, Organizing at 6:54 pm by bk2nocal

I can’t believe it has been almost a whole month since I last posted here.  I apologize for my absence, but its been a little hectic around here.  With all the unpacking (which isn’t nearly done yet), trying to stay caught up at work (which I’ve pretty much been failing at), trying to establish a new routine now that we are home (I have one written up, but can’t seem to stick with it), and just plain being tired all the time, I can’t seem to catch my breath.  I wonder sometimes if it is really that I have that much to do or if it sometimes is just that I don’t want to do what I have to do (I know the latter is true at least part of the time).  I know that those of you reading who have had or do have sick kids can relate to the fact that life becomes a sort of treadmill.  The medications, the doctor’s appointments, the constant worrying about their health (is that just a sneeze or is it the start of a cold?  is that just a regular cry or is there something more to it?)…it all becomes a little overwhelming sometimes when you realize that you can NEVER get off of this treadmill.  Its constant and it will continue for the rest of their lives.  And we’re relatively lucky.  We don’t have a feeding tube with scheduled feeds, we don’t have infusions to do, we don’t have special food…but we have is enough to sometimes put me on edge.

I think part of it was that it was easy at the RMH.  Everyone there was going through the same sorts of issues.  There was nothing strange about our schedule or our inability to go shopping with her or take her around other seemingly healthy babies.  But, then you get home and when you’re out and about you see everyone else with their kids in tow at the mall or Target and you realize that you have to plan ahead for these trips to do them without her because you’ve received your letter of warning about flu season and going to crowded locations.  At least M isn’t in school.  The letter also advised all transplant patients to home school until flu season is over and home school siblings until flu season is over.  At least we don’t have to worry about how to make that work.  But, its been a tough month of adjusting.  I had a little breakdown the other night because she sneezed more than usual that evening and then awoke in a screaming fit of what seemed like epic proportions…I immediately flashed back to our last midnight trip to Stanford from my sister’s house, with her breathing labored and her temperature spiking and I broke down.  She wasn’t even running a temperature it turned out and I think she just woke up ravenously hungry (I think she is going through a growth spurt) and wanted to eat.  But, I was tired and I panicked and I just couldn’t catch my breath or stop my sobbing.  Even once she had calmed down, I still couldn’t shake that feeling of panic.  I knew it was totally irrational, but I still couldn’t stop it.

I am doing my best to set up some routines so things get done around the house and at work and for M.  Its easy to let things go and then feel like things are piling up.  And sometimes it isn’t even that there is that much to do, but that I start the day already so exhausted that I can’t get motivated to do what needs to be done.  And sometimes, I feel like I accomplished quite a bit, but for every one thing I accomplish, another five get put on my list of to-dos.  And then things come up that are not part of the already stressful plan – the dog gets bit at the dog park and needs stitches and medicines (on top of M’s medicine regimen), the car’s water pump starts to go out and needs to get fixed (on top of our already stretched too thin budgeting after lost wages), the unpacking quickly creates chaos with lost paperwork and a disorganized mind, M starts to outgrow her 0-3 month clothes, requiring I find the tub of 3-6 month clothes in the chaos that is our garage presently and wash and put all of them away (the growth is great…the finding and washing and putting away is the difficulty), M starts to eat solids requiring a new regimen of figuring out what foods and how much and when we should feed her and a realization that eating will only get more complex as she grows and we are not at all prepared for it, being people who eat out often, don’t grocery shop enough and skip meals more than I would like to admit.  Many of these things are not any different than any other parent goes through.  After all, M is still a baby, she’s just a baby with a few more requirements in her day.

So, as we draw closer to Thanksgiving and a week off from work for me (well, not exactly, since I have to travel to North Carolina for work the Thursday prior to Thanksgiving and I don’t get back until the Tuesday before Thanksgiving, but close enough I guess), I am realizing that I need to get my world at home and at work back under control.  I need to figure out a routine that works for me and my husband and M.  I need to be vigilant about taking care of myself as well as M, as I can’t risk getting sick (reminds me, I need to start taking vitamins and Airborne for this trip to try to avoid any germs that might be traveling along with me in the plane, hotel, etc.).  M has got her flu shots – both regular and H1N1, and my husband has got the regular flu shot, but I’ve got neither yet.  I need to do that before I travel as well…and better sooner since its not even effective until 10 days after you get it (guess I kind of missed the boat on that one).  I need to find all the bills I need to pay and figure out our finances after our recent car troubles and extra spending for moving.

On top of all this, I now need to start figuring out the holidays.  Where will we go (where can we go?)?  For how long?  How are we going to pay for gifts?  Who will be coming to see us?  When will they be coming?  The holidays are always a bit of a stress, but this year is going to be just a little bit worse in all aspects.

So, I have decided that I need to start making lists – daily lists – of things that have to be done – right down to giving M her medicines the three times a day she gets them, giving her the solids she gets the two or three times a day she gets them, feeding the dog, etc, etc. because I feel like if I don’t have it written down, it just may not get done.  I tried to start this earlier this week, and I would get a few things marked off for the morning, afternoon and evening, but most of the stuff has built up over the course of the week while I was unpacking stuff in the garage, organizing the baby’s room with the new (used) furniture we got this week, catching up on laundry, etc.  But, I will start again next week and see if I can get just a bit more done each day…

This weekend the hubby and I are walking a half marathon to raise money for the Ronald McDonald House.  We have not done the training we should have in preparation, but we’re going to go and do the best we can.  The worst that can happen is we don’t finish in time and we get kicked off the road prior to the finish line…but we still raised the money and we’ll still be going to Monterey for the weekend…so, its all good.  My sister is going down with us to watch M while we walk.  And then my hubby is staying at my parent’s house on Sunday and Monday with M because she has a biopsy on Tuesday morning and that will save us about 300 miles or so of driving!

Life is whirlwind and I feel like I’m getting a little blown over right now.  Hopefully, the winds will die down to a nice breeze in the coming months.  I know the winds will never fully dissipate, but who doesn’t like a nice breeze?


October 18, 2009

Moving…and an update on Ittybittybaby

Posted in Cardiomyopathy, Habits, Health, Itty Bitty Baby News at 11:19 am by bk2nocal

I hate it….but, I’m excited to be back “home”.  We are in the midst of unpacking and setting things up and M has officially moved from Pack n Play to her first crib!  Its been very exciting and she seems to like it.  I’m sure it has to be more comfortable to be on a solid surface.  She has her ladybug bedding and her ladybug lamp and a LOT of tubs and boxes in her room right now.  But, at least she has a solid place to sleep!

We had some disappointing news at her clinic appointment last week.  She just isn’t gaining much weight.  I guess I appropriately named this blog – she truly is ittybitty.  She is almost eight months old now – and even adjusted, she is almost six months old and last week she only weighed 10 lbs. 11 oz.  She is still swimming in the 0-3 month clothes.  They are a bit concerned and they upped her calorie mix again – to 30 cals per oz, but then she just wouldn’t eat.  I think it was too thick or too strong-tasting, but she just wasn’t eating much of it at all.  So, we went back to the 28 cals per oz and she seems to be eating much better now.  She has been terribly fussy and wouldn’t nap the past week or so, but she’s been carted from my sister’s to appointments to my parents and then moved up here and had my husband’s parents here the last couple of days and I think she’s just been really overstimulated.  She ate great this morning and has now been napping (at her normal time – hallelujah) for an hour this morning.  Let’s hope it continues!

I thought I would post a positive article to end this today and I hope to be posting more regularly now that we are settled!

September 7, 2009

A Little Reminder…

Posted in Habits, Health at 1:17 pm by bk2nocal

I was reading one of the travel blogs I am subscribed to this morning (a way of escaping without being able to really travel right now) and it referred to an article, “Reminding Myself of What I Love”.  I thought it would be a valuable reminder to put on this blog as well.  It is very easy when you have a chronically ill child to forget the things you love.  I know that my days have been taken over by the administering of meds four to six times a day, taking blood pressure twice a day, taking temperature twice a day, keeping track of intake and output.  It can quickly become a grind.  And when it is an infant that is sick, all of this just gets piled on top of breastfeeding or formula mixing, diaper changes, baths, and tummy time.  Pretty soon, one might begin to feel more like a nursemaid then a person.  So, I think its valuable to take a step back and, as the article says, remind yourself of what you love.  Take some time to think about who you were before your child came along, before your child ended up in the hospital, before your child needed so much care at home…and figure out which of those things you can fit back in your life.

For my list, a few of the things I can pretty easily reincorporate them into my life, while some others are definitely going to be things I won’t be able to do on a regular basis for a while.  I encourage you to consider your own list and commit to working those you can into your schedule, even if its hard.  Remember, you have to take care of yourself in order to be a caretaker!


I really like to scrapbook when I do it.  But, I have this block against starting it.  It always feels like a big job to get going on a page or a project.  But, when I actually follow through with doing it, it feels great.  And looking back at the pages I create always makes me very happy.  This is something I CAN incorporate into the schedule.  It just requires me to be a little more flexible with my preparation and organization.  I need to just start a page without having everything figured out beforehand.  I think once I get going, I will definitely be hooked again.  And I have all these pictures of M’s hospital experience that need to be scrapbooked!

Music and Dance

I have been incorporating this a bit more with my four hour commute time.  I listen to the radio and my CDs.  But, I don’t have the same connection to music as I used to.  This is something from before I had M.  I used to go dancing all the time and loved music and learning new dance steps, etc.  I haven’t done this in a long, long time, but listening to the radio and CDs more often has reminded me of the happy feeling this used to give me.  I’m not sure how to incorporate dance, but music I can do.  I am going to make friends with Itunes and start burning CDs for my commutes.


I have always been a reader.  I love reading – books, magazines, blogs, etc.  This is something I haven’t really given up, but I could definitely devote more time to it.  I think it will set a good example for M if I am a reader.  I need to turn off the TV more often and read instead!


Yup, I like to play poker and go to casinos.  This is something that I will obviously not be able to do much in the near future.  Poker online is just not the same thing as in person, especially playing with friends.  We used to have a weekly game, but we moved and don’t have the same opportunities now.  Maybe we will be able to find someone when we move back to wherever our home will now be.


This one is hard.  I really miss being in shape and playing team sports or doing individual sports.  I swam, played water polo, dove, did gymnastics, played in a softball league, bowled in a league…I’ve done it all.  And I greatly miss doing those things, but its hard to get motivated because I’m so out of shape, it doesn’t seem as much fun anymore.  I know that is really defeatist thinking because you can’t get in shape until you start doing something to get in shape…so its a vicious circle.  But, I really do miss doing sports and fun types of exercise (tubing on the river, playing ultimate frisbee, etc.).  I need to MAKE myself start doing stuff to get back in shape and just get past the point where it starts to be fun again, and then I know I will be hooked.  This is another thing I really want to model for M – I want to be able to do sports with her and see her mom as fun and active.

Going to Festivals/Fairs/Exhibitions/Amusement Parks

These are just fun, outdoor, and leisurely activities that I love.  I don’t do them much anymore because (1) I’m a bad planner, so I often miss them, (2) I work a lot of weekends that they are open/fall on, and (3) my husband tends to think they are ridiculous.  But, I LOVE them.  The more local/cornier, the better.  They just seem to be places where you can really enjoy yourself without being judged.  I love people watching and these places are great for that.  I also just like to see people having a good time and these are great for that.  I really need to start following my Sunset and AAA magazines more closely and going with other family members or friends if my husband doesn’t want to go!  They are just too fun to miss out on.

So, there is a short list of some of the things I love and a little look into how I plan to incorporate them into my life despite having a six month old with a somewhat chronic condition.  It will be good for both of us if I can start doing things I really love more often!  I encourage you to figure out what it is you love and start doing some of those things more often as well!

March 29, 2009

Eat, Sleep, Change, Repeat

Posted in Breastfeeding, Habits, Organizing tagged , , at 11:02 pm by bk2nocal

That is now my life.  And I guess it will be for a while to come.  I should put “pump” in there somewhere as well, but I’ve been really bad about that the last few days.  It is difficult to get motivated to pump when you really don’t get much milk and its somewhat painful.  I know I should continue to do it and I promise myself at the end of each day that I will be better about it the next day, but I’m not.  And now I have to face the lactation consultant tomorrow morning (we have another Drs. appointment and LC appointment) and I hate that.  Its like being back in school and not getting your assignment done and having to face the teacher.  The guilt…

I also need to try to work on organizing things in there somewhere.  Some days are better than others.  I got our bedroom (which we are now sharing with the bambino) all cleaned and organized yesterday – even vacuumed.  That is pretty good.  Now I need to work on the spare room, where I have moved all of my clothes to have room for the baby stuff in our closet.  In addition to organizing all the clothes and shoes in there, I need to get all the bags of cards and miscellaneous items that have been thrown in there from our stay at my sister’s and the baby showers and just randomness found while cleaning other areas of the house.  After that gets done (which has to happen this week because my in-laws are coming to stay with us next weekend and they will be sleeping in that room), I need to get cracking on the garage, which my sister described as “a baby store bomb went off in here.”  There are empty boxes, full boxes, plus all the other stuff that was in there before all the baby stuff showed up.  It really is an organizational disaster right now.

So, between the eat, sleep, change, repeat each day, I need to fit in these other things in order to be able to go back to work at the end of April without consternation!

If you haven’t figured it out, I’ve been horrible at keeping up with my commitments from the previous post.  I am really close to giving up on breastfeeding.  I don’t WANT to give up, but the whole pumping without enough milk and a baby who is too small to actually latch on and suck enough to get her fill is really getting to be difficult to power through.  But, I know its the best thing to do and part of the problem is my inability to stick with the things I should be doing.  I need some motivation!

March 25, 2009

Itty Bitty Getting Bigger

Posted in Breastfeeding, Habits, Itty Bitty Baby News tagged , , at 2:35 am by bk2nocal

Went to our second pediatrician appointment yesterday.  M is doing well – she is up to 4 lbs 13 oz, which means she has gained 8 oz in 7 days – which is pretty good.  We spent the majority of time with the Lactation Consultant. My prolactin is low, so I have to start taking some drug to fix that and M is still not really latching and sucking. She either sucks without latching or latches and then just sits there. But, the consultant seems convinced that we can make it work as she gets bigger. I have to admit I am not 100% at home with everything the Lactation Consultant says I should be doing. I’m just not totally motivated and I need to work on that. Here are some things I need to do:

–Pump more often – 10-12X a day, and I am more likely to be at 7-9 times right now. I just hate having to go to my bedroom and sit there while I pump. If I had a TV in there it would be better, but I don’t and reading a magazine while trying to double pump is about worthless. But, I need to do it in order to make sure that what milk I have sticks around until the medicine gets here.
–Do a better job of making sure I “nipple” M at almost every feeding. She would probably get better faster if I gave her more chances. I usually only do it two or three times a day because it is kind of a hassle to do when she either gets really angry and frustrated (when she is really hungry) or just sits there (when she is not really hungry). But, I should definitely try to do it every feeding that I am doing with her – the ones that J does with her I could take off.
–Drink more water. This will help with both milk production and probably exhaustion.
–Do more skin-on-skin each day. This is something that I can definitely do easily since the Moby will allow me to do it and still do things around the house, work on the computer, etc.  I did it for 45 minutes today, but M didn’t seem very happy with it and was fussy the whole time.  But, she has been a fussy baby today in general.

I also need to get going on my daily routines.  Our friends did a phenomenal job of getting the house clean before we came home with the baby, but I am having problems keeping it that way.  I made a list of daily to-do’s, weekly to-do’s and monthly to-do’s to try to keep up with it, but I have not been doing the list or delegating the list on a daily basis.  Today, I have finished the things I need to do in the kitchen and I’ve done everything but swept in the dining room (sweeping daily is key – we have all tile floors and a very hairy, shedding dog), but there is a lot more on that list.  I have started a load of laundry, but it needs to go in the dryer and then be put away.  The problem is I have not been doing the daily stuff and there is a bunch of stuff that needs to be done beyond that – sorting through a pile of stuff, gifts, cards, books, clothes in our extra bedroom, sorting through a bunch of stuff, including my pre-pregnancy clothes which I am now able to wear, in the garage.  It all just gets overwhelming.  But, if I got off my computer and did a thing or two on the daily list every hour, I think I can keep up with it.  I just have not been motivated.

My back hurts like hell lately…and I obviously could use some more sleep, but I think that will be the case for many months (years?) to come.  But, if I could get a handle on things around the house I think I would be much less stressed and more happy.  We shall see…