Prayer request

I woke up a few minutes ago in a certain amount of discomfort. I thought I was simply very engorged so I went to pump. However it became clear right away that something was not right and at the very least I have a badly blocked duct. It could turn out to be mastitis again, but I do not have a fever and have not been feeling run-down, that I can discern.

After pumping and much massage there is less of a mass, but still plenty of pain. I will continue to try and work it through today, but I fear I may need to seek medical attention and have not got a local doctor to go to!

On the other hand, Emma's breathing seems to have been pretty labored all night and she has had low oxygen levels about 5 times, whereas we have rarely seen it drop more than once in a night. For the past few days she's only pooped once the whole day and seems to be sleeping less.

Please keep us in your prayers.

Sunny disposition

The bathroom is still out of commission, there is still a layer of dust on most surfaces, but you know what? The sun is SHINING and it's going to be a beautiful day (yes, warm enough for flip-flops!).

We had plans to visit friends this weekend for our first family trip. However, because we simply have to get the bathroom back on-line and putting that off until next week simply isn't smart we have had to change our plans. The situation brought to mind this scripture, so apt for much of our recent life!

Now listen, you who say, "Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money." Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, "If it is the Lord's will, we will live and do this or that."
James 4: 13-15

Brian and Chrissie - we WILL make it out to you soon.

Trying to adapt our plans, Emma and I hit the road to go and see what bathroom fixture the Home Depot is offering. I was pleasantly surprised. If we didn't have inches of cement to pull up I'd even think we could re-do the bathroom in one weekend - or have I been watching too many shows on TV!

Back home and Emma is in her summer gear playing on the floor! It would be wonderful to take her outside, but she keeps her eyes closed when it's this bright (she can't squint, remember) and we don't have any leaves on our trees for shade!

There will be time for all that!

Cry me a river

When I was seven months pregnant Scott and I began a six week renovation of our kitchen and dining room. For weeks we had a plastic sheet covering the archway into the living room and we lived on sandwiches, made inside the fridge, or take-out (not so bad for a pregnant food-lover!!).

One of the hardest aspects (after the cost of everything! ;-) was the dust that covered the rest of the house. It was unavoidable really, and I could say it was my hormones that made it so upsetting, but let's be real - I hate dirt, and even more, I hate dirt in my home!

So tonight when Scott ripped out the sink, wall and floor, without shutting the bedroom doors I think it was the straw that broke the camels back! My dresser had a layer of cement dust on it as I brought up the freshly laundered linens to make the bed. Poor guy, I feel so bad that I moaned about that like it's his fault our bathroom sucks.

He had to go take a shower at his parents because we can't turn the bathroom water back on - the faucet pipes have no shut-off!

I simply don't know whether to laugh or cry at the continuous trials that keep coming up! I lie, I wanted to cry but I think I'm all out of tears.

I don't even care about the money (someone print that and frame it - may not see it again!), I just don't know how I can face either renovations of our ONLY bathroom (yep!) or a temporary fix delaying the inevitable. Here all day. With a baby.

Finally, please pray for me - it is only my self-centeredness that makes this as big a problem as it is. I'm a big girl, I can admit that. I'm still learning how to get over myself and get on with what lies ahead. Anyone know the secret to it? Really??

I truly really hope you're having a better day. No sense in us both being down, right?

It doesn't rain, it pours

As we start to get a handle on things and I feel like I'm hitting stride something pops up to test us once more!

A few days ago our bathroom sink became blocked. As I have been shedding copious amounts of hair we assumed that I had caused the blockage. Our good friend, who is also a plumber came to take a look. They did pull a bunch of hair out, but guess what else they found? That's right, the pipe is leaking in the wall, somewhere between the bathroom and the basement!

So, what to do? Well, for now we are going to rip the sink off the wall and see if we can patch the leak. But inevitably some time soon we will need to replace the pipes, and well the bathroom!

Of course all of my HGTV research will come in handy for design, but so far I have not been hired as a design consultant so it's back to Scott's overtime to pay for it!

It's at times like this that the extra tiny half bathrooms really come in handy! Of course it doesn't really effect Emma. She has her own bath tub and does not use the sink! For me it just means I have to go up and down the stairs a few extra times at 1am, 2am, 5am and 6am to use the sink for feeds - but I'm not complaining!!

This morning an old friend asked me a question about Emma no-one else had!  The question was "what does she do?"  At first I was confused!  When he repeated it I realized he meant "what does she do?"  A question of genuine interest in my baby!  Thanks Bret!

Now I know that most people know what Emma is up to because of the blog, but it was so great to just reel off all the things she is doing!!  I'm such a proud mum! 

So if you don't know, here's what she's doing...

• grasping and waving toys
• holding and replacing her pacifier
• rolling onto her side, and from her side, onto her belly
• reaching for and grabbing toys while on her belly holding her head up
• baby chatting, including eye contact
• turning toward voices she recognizes
• sleeping in her own room
• generally being cute!

Last night Emma slept from 8.30pm to 7am! It is awesome that she gets so much rest.  Even better for her is that we feed her at 9pm, 1am and 5am and she does not need to wkae up for any of it!  If only the same could be said for us!   ;-)

Whine and dine

In church today Pastor Bob played this clip: http://www.youtube.com/watch?v=R9ya9BXClRw If you can spare a few minutes, it is well worth watching, after all, how often is an Oprah segment played in church! It's not a Christian message, but on the whole it's powerful.

After watching it, and PB's sermon I was convicted about complaining about things. You see I don't really mean to complain about anything. Statements of fact, if something I'm not happy about seem to come out like that. Maybe that is the definition!

It is entirely possible that many of the things I journal on the blog day to day read like complaints, after all it is hard to write with inflection! So I am taking this opportunity to assure you that I find great joy in having been blessed with my baby girl. Even more than that, I feel blessed that I have been on this journey of discovery, with Emma and Scott, through some dark times, always feeling the warmth of God's presence and the light to guide us.

Every day that Scott is blessed with work, so I can take care of our precious gift is a joy. Every cry that let's us know she is totally aware of her surroundings, even if it's not happily, is a joy. Joy is a choice that cuts through fatigue. Much like love, which is also a choice.

you can be unhappy about something (late-night diaper changes, for example) but still take joy and love what you do! If I did not find joy in such things I would not jump up and tend to Emma when she needs it, without hesitation. That is not to say Scott doesn't, but at this time, Emma's care is one of my primary purposes, in which I am honored to serve.

One of my aims with the blog is to try and share the struggles and trials that we go through, not just because Emma has Moebius etcc, but just as new parents! To encourage others that we all go through trials, but in God strength and joy can always be found!

I have some very happy memories from my childhood, as does Scott and we long to give Emma even greater freedom and adventure to follow her dreams. (Referring to the video clip...) but I can not guarantee I'll ever be happy about her drawing on the walls!!

I guess after every complaint, and the temptation to feel dissatisfied I hope to take one more step to thank God that we are even here to experience these things that so many could only dream of.

A big step

Thank you all for your encouragement. With the new day comes new possibilities!

Last night we took a big step and moved the crib, with it's tiny occupant, back into the nursery! Emma fell asleep about 8pm during the deconstruction and was put in the crib in her room for the first time at 9pm. She slept through until 6am.

Of course, she had moments of stirring etc but we left the light of and under cover of darkness placed the pacifier in her mouth! She didn't even wake up for diaper changes!

We got a basic baby monitor so that I could hear when she cries, not just when the alarm sounds on her medical monitor. It also meant that I could just leave her in her crib for a while when she was awake, and listen to her chatting away!

I also spoke to a couple of Moebius moms, and they reassured me that their babies did start to laugh even without smiling (well, I had to ask!). One also suggested we assume that if she's not crying then she is smiling! I'll give it a try and also keep talking to her etc.

Things are looking up!

Feelings

You know those characters in movies that are quiet people, but when they do speak it's all negative? You can imagine how hard it would be to stay positive around them right? Now imagine that they speak a foreign language so all you here are the negative tones, without being able to respond to the specific issue.

That's is how I sometimes feel about Emma. If she's quiet, great. But some of the time she cries for no reason. I think that's probably how it is with most babies at first - especially when you're sleep deprived! However, I think by now (approaching 5 months) many babies start to smile, coo, maybe even laugh, and having been around those kind of babies I know that will make you feel special!

so I am struggling, still, with staying positive some of the time. Don't get me wrong, when she is kicking around and playing with her toys, or looking up at me and chatting, my heart swells. But say I'm driving in the car, like this afternoon and she's tired, rubbing her eyes (big no no) and crying. Well, it's all I can do not to cry! (Yes, a nap today would've helped us both!)

That's when those memories of pre-baby life seem so perfect (even though they had their own issues!). Thankfully I do realize that it's the selfish part of me that allows those thoughts, and when that happens I remind myself that Emma is not at fault, and I love her to pieces. I wouldn't go back to life before Emma, and I can deal with the tough times.

I wonder if things will get easier when she can show me I do make her happy at times. Though I suspect there is always a little grass-was-greener syndrome for us all!!

On a lighter note, when we got home this afternoon Scott took over and got her changed for a little exercise...

I think he was channeling Jane Fonda!

Baby friends

As you can see here, Emma is a very friendly baby. This picture was snapped on easter Sunday as Emma and her buddy Nate (Pastor Bob's Grandson) chilled out between services! Nate is two months younger than Emma, but age is just a number!!

Despite the innocent face Emma displays here, underneath lies a determined soul! This week we are learning about boundaries. Emma feels I should have none, and carry her around all day and hold her at will. I am working endlessly to try and construct some, that would allow me to get some chores done, or rest!

I have already had lots of "advice" on the matter and if only listening to her scream at the top of her lungs was not so, well, excruciating I would find it easier! I mean, how long is too long for a baby to be crying so hard?

I did flash back to the NICU today though, and the baby boy in the next room. He would cry so much all day, mainly for attention. I hope his Mom gets plenty of rest before they bring him home.

I fear I may have created a monster with Emma. I would happily leave her alone, but as she gets more mobile there are less places I can leave her unattended - she can roll over but struggles to keep her face out of the carpet for long. To plug her in to the monitor at these times would be futile as she kicks her legs so much to set the alarm off!

And so we daily dance the fine line between careful observation and paranoid fear!!

Oh, the 20 minute nap, after 30 minutes of crying is over! And so ends my respite!

Hard day

One grouchy baby, limited nap time and a session with the physical therapist - one tired baby!

The session with the therapist was very encouraging and we have some things we can do with Emma to help her progress.

I'm sooo tired!!

Weighing in at...

... 10lbs 8oz!!! Can you believe it? Our prayers have been answered - 9ozs in 8 days. The pediatrician said babies should gain between a half and full ounce per day, so that is right on!

I will let the doctors know at the hospital and see if they want to make any changes to her nutrition, or just leave it and hope she keeps gaining.

On another note, the scar from her gastroschisis surgery may be infected, so please pray that there is no problem with that.

Emma and I are going to celebrate with, what else, a nap!!

Weekend Update

This Weekend was pretty quiet - I think! I can never be too sure as each day seems much the same. Especially this weekend when Scott worked all day Saturday.

We did go out for a date though, on Saturday night - you have to have some fun even after you have kids!! Pops and Grandma Morton, along with Aunt Kim babysat again and got to play with the baby while we reminisced about a quieter time!

Of course Sunday is always a day that stands out in my mind, as much as for the mad dash to get us all ready and out the door together, with or without breakfast, as much as for the awesome preaching of Pastor Bob. Yes, we could simply get up earlier, but I already told you, we go out on Saturday night!!

Seriously though, we will need to work on getting out the door earlier. It's very hard to get you head and heart ready to receive if you walk in after the service has started. You wouldn't want to get to a movie after it started either, right! Thankfully things will get better (I've been told) and I think we are doing pretty good for just a few weeks!

Now, today the inevitable happened (and it kills me!) Did you guess? I missed a doctors appointment! The one where we get to see how much weight Emma gained over the past week. Inevitable because we have SO MANY appointments with SO MANY doctors and also because I put it down in two different places each with different times!!

We are on again for 10am tomorrow, so stay tuned!! to try and get a sneak peek Scott and I got on the scales with her last night, after first taking our own weight. We both got a reading that she is 10lbs 5oz, which would be awesome, so we can only hope. I'll do it again before I go tomorrow!

As for me, well, I came in under the 180lb mark on Saturday!! (I know some of you can't believe I shared that, right!!) Well, after being over 230lbs, and thinking I'd never make it back down 179lbs feels pretty great! There's more...

I have been watching many style and decorating shows these past few weeks (I'm available for advice in either area now I'm an expert!!) and tonight I went through my closets clearing out the clothes that didn't even fit right before the baby. Anyway, I simply had to try on my old jeans again. That's right - I got them on AND buttoned. It's a wonderful feeling!

That's enough for now. Here are some pictures form the weekend, starting with Emma's passport picture that we took tonight! Enjoy...

Progress

So Emma definitely has diarrhea, but her pediatrician did not want to make a call on it! He said to call the team at the hospital and I'm waiting to hear back from them.

In the meantime, Emma and I ran some errands and when we got home it was time to eat. I laid Emma on the sofa by the feed bag, while I sat next to her to take care of future meals! I set myself up, turned to look at Emma and this is what I found...

This is so great. she needs to spend lots of time on her belly to build up her arm and chest muscles by pushing up. Before if she was on her belly her face would be buried in the sofa! Of course all this exercise also burns the precious calories she needs to grow.

Within 15 minutes she'd moved on to this...

I wonder how long this will last!

New experiences

Emma and I slept until 10am this morning, but only after she got really upset about 8am. I am pleased to say I don't go crazy when she cries out like that, but I am definitely relieved when she stops!

I think she might have a tummy bug, and so called the pediatrician. The first thing they asked me to do was take her temperature - rectally!! Well, that seems like something you should have training for! I did it and we both remained calm! Unfortunately the reading was in celsius, which is how they read it at the hospital, so I don't know what it means!!

I'll keep you posted!

Some people think I have control issues! I prefer to think of it a management issue. I realize that I can not control my life, there are too many outside influences, and besides I try to make decisions based on God’s will for my life, not my skewed desires.

When we chose to try for a baby we were steering things, but the actual pregnancy was not under our control. I made every effort to make choices that would keep the baby healthy, but that was not completely under my control. When Emma was diagnosed with gastroschisis we felt like our lives were spinning out of control, for a while, until we chose how to respond to the change from our expectations.

We don’t have any say in things like that, but our response was one of faith and trust in God’s plan.

My “control” issues relate to benign issues like keeping the house in shape, losing weight. After Emma was born the only decisions I could make were about what time I would be at the hospital!

Since Emma came home I feel like I’ve been playing catch-up, unable to get a hold on any one area. I’ve been losing weight, but not intentionally! Emma gets naps, but we have not been consistent with a schedule so she gets over-tired. And to a certain extent my daily plans are abandoned because I don’t have the energy!

Well, today I’m really hoping we can be more pro-active, Emma and I! Today I was able to do Pilates for 45 minutes! Then also take a shower – good job! Emma cooperated by playing in her playpen (and dozing!).

Next we are going to run errands – all of them!

If I can get consistent with that maybe I’ll work on healthier eating and get Emma on a schedule! One day at a time though!

I can’t control the future, and I am thankful that God knows what’s in store and is preparing us for it by how we handle the little things.

I think Emma must have been tired after last nights activity - she went to bed at 9pm and did not really wake up until 9am! Of course she woke up briefly at times, but needed very little encouragement to go back to sleep - which I was more than happy to provide! I too got to sleep on and off until 9am.

Unfortunately as we slept her g-tube had leaked, so she had to get a bath! Thankfully I got to take a shower also!

We hung out at a friends house for a couple hours before finally making it to the grocery store - we couldn't go yesterday as the vaccinations, well, upset Emma for most of the day!

As I made dinner Emma chilled in her playpen in the kitchen doorway. It worked well and I feel like I'm slowly making progress in balancing things. Unfortunately the pangs of guilt are still there when I leave her laying down while I do things.

To keep you updated on her weight, Emma had gained 3 ozs over the past two weeks - not as much as she should have. The nutritionist wants her weighed again next week so we have two full weeks of the lower volume to assess. I realize now just how awesome it is that we have medical assistance, and do not have to pay for each of these visits!!!

Super Dad

Being a new mum is hard work. Sleep-deprivation, one-sided conversation, slavishly changing diapers and placing pacifiers. And that doesn't begin to cover house work, cooking etc. So imagine my joy when Scott came home from doing 3 hours of overtime, strapped on the baby and picked up a Swiffer!

Only a truly great man would then also let me take a picture for the world to see!

And now you can see first hand one of the reasons I have been able to get through the past few months with so much joy - I have a wonderful husband and partner!

Monday Morning

We are starting to condition Emma to hate Monday mornings, this week she had 5 immunizations before 9.30am! However, being a pro at this kind of thing she stopped crying after a cuddle and then went to sleep in the car. By the time I got her home she was out...
Of course I couldn't leave her to sleep in the fleece (what's wrong with me?) so I tried to take it off and she woke up! Right now she's trying to talk her mobile into moving! Of course it won't because I want her to fall asleep again!

Emma woke up at 2am last night and I mean woke up. She was kicking and talking to her mobile. When she does that you have to switch the monitor off because it won't pick up and keeps beeping. Since she has to be observed when not on the monitor that meant I had to stay up with her!

(In the course of that paragraph I gave in and started the mobile! Well, she was yelling at it!)

Where was I? So for some reason even after she fell back asleep she required her pacifier all night. Yes, you guessed it, I was official pacifier put-in body. Needless to say I'm hitting the pillow the moment I'm sure she'll be out for a while. (I'm no good at cat napping.)

And after that we are going to run errands and get some groceries (that's right, last week I did not make it to the store and poor Scott was scavenging in his own home!) Thankfully we don't have anymore appointments this week, so we should be more relaxed.

In case you were wondering, she's only gained 3 ounces in the past 2 weeks. Clearly that is not enough. She seriously needs to starts growing, or at least the doctors need to agree on the best way to fatten her up. I love that she's so cute and all, but at least when she's bigger we can put her in all the cute clothes she keeps getting!

Happy Resurrection Sunday!

Good Friday

I feel pretty good today, and I think Emma does too! We stayed in bed until 10am today, except for a half hour downstairs for breakfast! I put Emma in her playpen this morning, to play, not just sleep. I left her alone with her toys and after a little while she started talking to them! There is no sound sweeter to my ears!

Yesterday a team from Early Intervention came to assess Emma's needs for therapy at home. They determined that overall she is about 2 months behind, although in some areas she is age appropriate. She should get weekly therapy starting in a couple weeks.

One thing that was a big hit with her was a string of beads that she followed around, turning her head. I have some that Mrs T. gave me for Valentines so I dug them out and
she loved them too, and quite appropriately they are heart beads...

She fell asleep clutching them while we were chatting to my Grandma on the webcam. I can say "we" because Emma was talking almost as much as me! Don't worry - I won't be leaving her alone with them!!

Of course it would be remiss of me not to mention the real reason this is Good Friday. The sacrifice of Jesus Christ, giving his life and dying on a cross for you and I to be reconciled with God is what we remember today. Good because it was his complete goodness that gave us such a gift.

Without this sacrifice, and the new life my faith in Jesus brings, I would not be able to share such great hope with you, hope for a life beyond all imagination.