Selective frugality!

No matter how much I fret about finances (and that's regardless of what state they're in!!) I somehow have no problem spending money on Emma! I'm not so worried about toys at this stage, but I will pick up the odd cute outfit and anything that we think might help her development.

Today I simply had to go to the pharmacy. Beforehand I stopped by my friends house for a while. From there I headed to Babies R' Us - did I mention she needs a summer sleepsack? I had a look at the Bumbo seats there and they didn't have the right color, so I popped in to Target, where they happened to be on sale. I then dropped off some things at the church, by which time Emma was due for lunch (as was I) so we headed home.

That's right, I totally forgot the pharmacy! But look how cute Emma looks in her Bumbo...


And, my hero, Scott is hitting the pharmacy on his errand run!

Did I mention I picked up a cute sundress for just $6? Now if only the weather will stay on track!

Pictures included!

We got an email from Emma's nutritionist within hours and increased her feeds to 140ml, an increase of over 10%! So far she has been tolerating it well and when we go to the hospital next week we hope to see some weight gain.

Emma is increasingly active with a love for waving her arms and legs! also a favorite is pulling on any tube or wire she can find, which includes her feeding tube (she's tried to eat the end of that), her feeding bag (she laid on the sofa today pulling at the tube, watching the hanging bag shake!) and her pulse-ox wire that is attached to her foot!

Here she is after being caught waving the bag!




This afternoon Scott came home and picked up Emma as soon as he could! It chokes me up to see how he can't wait to see her! Of course after they'd both had dinner the inevitable happened:



Later on as we debated who would make a trip to pick up some milk Emma started to cry from her crib. Scott drew the short straw (I think!) and went out while I went to tend the baby. Now all the books say not to stimulate the baby too much, just get in and get out so they will get back to sleep. Tell me if you could find this and not at least want to give her a quick squeeze!

Inspiring message

On Sunday PB started a series looking at the life of Noah and inspired me! Here's my take on the sermon, and what I have read elsewhere.

PB started out with the background that we rarely look at next to the cutesie pictures of the Ark and the animals. It's really key to why Noah even did what he did!

The LORD saw how great man's wickedness on the earth had become, and that every inclination of the thoughts of his heart was only evil all the time. The LORD was grieved that he had made man on the earth, and his heart was filled with pain. So the LORD said, "I will wipe mankind, whom I have created, from the face of the earth—men and animals, and creatures that move along the ground, and birds of the air—for I am grieved that I have made them." But Noah found favor in the eyes of the LORD. Genesis 6:5-8

So there it is, God was going to wipe out everything and everyone on the face of the planet. But one man (and because of him, his family) were spared because of his heart for God.

Now even though God chose to spare him, it was not that simple. There was one condition – Noah had to build an Ark! Okay, well that may not have been that big a deal right? I mean the Bible says he “walked with God” so he knew his faith was well-founded.

However, as I understand it, Noah, who lived in a land-locked place and had never seen rain (the earth was watered from the ground up until this point) had to build a giant boat. Thankfully he was not required to round-up the animals – the Bible says the animals came to him (after all, this was God’s plan and He can direct the animals!).

But Noah wasn’t a ship-builder, so taking this huge step of faith, spending many years building a boat for a flood that The Weather Channel had not confirmed. And all the while, he’s surrounded by people who don’t give a hoot about God! The people around him are living life doing as they please, doing things that I’m sure they knew were contradictory to God’s commandments. Even if they are “good” people, they are not living for God’s purposes, and that put’s them at odds with God.

Amongst all of this, it’s easy to imagine that Noah took some abuse for his wild and crazy theory on the flood that was coming. Even if he didn’t run around like Chicken Little, shouting “the end is nigh”, his very occupation of building this boat was like a siren saying he believed judgement was coming and he was determined to be saved even if it meant standing alone amongst the non-believers. His actions were in effect condemning their lives.

This account is so much bigger than just a boat to save some animals! It’s about having Ark-sized faith in what God says, if you have personally experienced his power in your life. And maybe it’s about seeing those who have had that experience and in some way changed their life as a result and thinking that it may be time to decide what you’ll do when the flood comes.

The last part of this account is the rainbow:

I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. Whenever I bring clouds over the earth and the rainbow appears in the clouds, I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life. Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13-16

The flood won’t return, but Jesus will.

I wanted to share this with you because it’s such a great example of faith that I can only dream of, but aspire to. I’m never going to be perfect and I can’t even say for sure I’d have the courage to give it all up to build an Ark, but if you ever think I’m nuts and standing on my soapbox too long, just call me Noah!

Weekend Update

I had a great birthday on Saturday and Sunday was pretty good too!

Today we had a visit from a nurse with the homecare supply company. She seemed pretty surprised that she was sent seeing as we are proficient in caring for Emma! Anyhow, she noticed some photos I had taken in Africa and asked me about them. Turns out she is a new Christian that came to Jesus because of her daughter! I got the opportunity to encourage her and hopefully made her day a little better.

Then we headed to the pediatrician to get weighed. we were optimistic because Emma seems to get heavier every day! Unlike previous visits she was pre-feed so I expected the increase to be a little lower. However, a gain of 1oz in 2 weeks (yes, ounce, not pound!) is not good.

I am a little frustrated because I don't know what to do. The pediatrician thinks we should increase the volume of feeds, but defers to the specialists (who said to not change anything last time). I have been following the specialists guidelines to the letter, but still I feel like somehow it's my fault that she's not gaining weight. (Yes, irrational guilt issue, I know.)

Hopefully the specialists will email me back soon and at least give me some idea of what they're planning. It's hard to leave this all up to the doctors, but I really don't have a better idea!

We are back at the hospital next week for follow-ups with neurology, pulmonology and GI!

I am H-A-P-P-Y

We had so much fun at the Aquarium I can't even tell you! I touched a stingray, jellyfish and two sharks!! I also came face to face with a huge hippo, with only thick glass between us (No, it was not a mirror!).


Scott thought it was funny that I was so excited about the weird creatures and cool exhibits, like fish with legs and frogs that look like moss! I darted from case to case while he pushed the stroller!

Emma got a free penguin as we went in, so we didn't need to get her a souvenir! We grabbed a bite to eat as soon as we went in, she fell asleep and stayed asleep the whole time we were there!!


We came home via Target (success - 3 new tops!!) pretty tired, so we opted for a Chinese take-out buffet at home for dinner and the rest of the family came over with a cake (yeah, baby!!)

(The last picture, of me hurrying Scott along, before the battery ran out!)

Spending the day with my husband and baby girl - priceless!

No doubt

So we are having a webchat with my parents and Emma is sat in her rocker (which is where I put her when she gets fed). Sat behind the rocker, I look over and say "What?" to her and she makes this sound. I thought it might be the start of a cry because she'd been fussing when I put her in there. So I did it again, and so did she!

My parents and I enjoyed listening to Emma crack up at me! I called Scott so he could hear too and he said to video it. So I did, and here it is! Enjoy this wonderful sound (Emma laughing, not me - sorry if it's loud, I was right by the microphone and very excited!!)

Birthday plans

When we were kids my sister and I would often stay with our grandparents during school breaks. We used to do so many different things (ask me and I'll list them!) but one of my favorite was going to the aquarium. We went several times (I think) and I loved to see all the weird creatures, especially an octopus! I'm not really a zoo person though! Maybe the fish seem more free - I didn't think Finding Nemo was real (not like some after seeing Happy Feet - you know who you are!!)

So, for my birthday we are going to the aquarium! I am so excited. I hope that we can create some wonderful memories as a family by doing things together and feeding Emma's imagination.

Now, I need to clear off my digital camera memory - we have only 6 photos left! (There is room for 1500 on there, but some of the memory is taken up with video!)

This week we three stopped by ICF. ICF is the church that is in a building that we helped to rennovate from an industrial space 3 years ago. As I stood on the porch in the warm sun, looking at the street that was so familiar to us the whole year of the rennovations I got thoughtful.

This time three years ago Scott and I had been engaged for 3 days! We were spending most of our free time at ICF, grabbing late dinners together afterward. Boy did we eat a lot of take-out food! I can remember it so vividly, but it's hard to believe that just three years have passed. We are approaching our second wedding anniversary, and have a baby almost 6 months old!

The past 12 months have probably been the hardest, but the best, and that is one of the strangest notions! Sure things could have been easier, could have been different, but as far as my experience, each year gets better than the one before!

Love a duck

Emma had a visit from a speech therapist today. She will be working with her once a month, in addition to the physical therapist (gross motor skills) and occupational therapist (fine motor skills). All the therapists were so surprised at how good Emma is doing after her eventful beginnings.

Specifically she said she would not expect much more verbal communication for a baby without the medical challenges. She gave us some things that we can do with Emma to encourage her to "talk" more. One is for me to talk all day, describing everything we do. No problem, I hear you say! Yeah, I'm not that talkative that I find it easy to talk to myself!

Another thing is repeating certain sounds to her, sounds that babies usually make first. They are:
Ba
Be
Bi
Bo
Bu
And then the same vowel arrangement after D, M and N. Each one repeated 5 times and pausing to allow her to respond. Apparently B, D, M and N are the first consonants babies use!

Something else you may not know - Emma loves her duck! Check it out (I don't think it talks back!)

As for Emma's cold, she's still fighting it, but is otherwise much like herself.

Just a thought

Today I read this in a devotional:

Courage is not the absence of fear. Courage is going ahead and doing what you’re called to do in spite of your fear.
You can have faith that God wants you to do something and still be scared to death. You have to begin with the faith you already have: it may be just a little, but you start there. You take your little faith, “Lord, I believe! Help me with my unbelief!” You put it in our big God, and then he’ll show you how he works out huge results.

Sometimes people will say they don’t want to go to church or make a commitment to Christ until they understand it all.

What I took from it? You can't wait until you're 100% sure and not scared to move forward.

I could list many things that I am fearful of, not only in my life but in the lives of my family. But I won't! Instead I'll just say that I am not giving up hope that we will all be together in eternity. Whatever happens in this life is but for a short time. What we need to think about is how we want to spend eternity. (If you don't believe that life is eternal you probably get much more depressed about your birthday than I will!!)

Nothing in life makes complete sense. But if we had to understand everything completely before we trusted it we would probably live in a cave alone!

Yesterday afternoon I ran some errands (no success on the shopping front! :-( ) and when I came home this is what I found:


Emma got plenty of sleep yesterday and still slept all night.

Today she was more like herself, wanting to play, but she still has a cough and plenty of [whisper] snot! Thankfully we have been able to keep her clear enough that her oxygen level is good.

Always looking for new ways and places to make Emma comfortable this afternoon she staked her claim on the one and only recliner:

"One million dollars!"

We have now booked our hotel for the Moebius conference and it looks really nice! It has a pool, nice rooms and our meals are included with the conference, so it should be a nice mini-break as well as finally giving us some answers about what to expect for Emma.

It's a cold

At least it looks that way. I had an email back from Dr. R this morning (how awesome to be able to email a top doctor on Sunday night and get an answer back Monday morning! We are so blessed.) and he said it is probably a cold, or teething and not to worry too much if her SATs (% of oxygen, saturation, in her blood) are okay - between 90-100%. Thankfully they are in range.

However, poor Emma sounds terrible. We had to suction her for several minutes last nigth to get all the snot and drool out. (sorry! TMI?) Even then she still sounded congested but we couldn't bear her screaming at having the tube down her nose and throat.

NB: There is no worse scream than one you're responsible for!

We found that when she was laying on her belly she did not have to clear her throat so much and relaxed. So, we broke the major rule about letting a baby sleep on their belly. She was out like as light and sounded great, SATs and heart-rate looked great.

Of course I could not leave her like that - she still struggles to lift her head when tired, so after an hour or so I put her on her side and she slept the rest of the night.

She has now been sleeping for most of the morning (on her belly!) which is just fine as she needs regular suctioning when she's awake. That was not an issue in the hospital, but apparently she has developed an acute aversion to it and pulls her head out of the way and grabs the device making it tough to do! At least asleep she is not aware of the discomfort and I can just keep an eye on her.

I pray that this is short lived and she'll be back to herself soon. Until then it's probably best to keep her at home and as comfortable as possible. I don't want to take the chance it could get worse by going out and about.

I guess I'll do some laundry...

Peace and joy

So I did get my hair cut, and I am very happy with it! It's great to hold Emma up to my shoulder without worrying about it getting in her eyes or mouth! Not to mention she can't pull on it now!

I also went shopping and got a couple of things, but I will be hitting Target this week for more!

A new haircut and a couple of new tops has a wonderful ability to make you feel like a new person, or it may just be me! A new lease on life, and half the time to wash and style!! (Not to mention reduced shampoo costs.)

It may be just in time. Scott and I have a few concerns about Emma that I have just shared with her doctor in an email. Allow me to elaborate...

Emma is probably missing some nerves in her throat which affects her swallowing. This is why she is fed through a tube - feeding by mouth could lead to choking or aspiration. Increasingly Emma is coughing. We had thought it was because she was getting her food to fast, but now we think she is having to clear her throat more. She has a lot more saliva, which is thick and sticky, and doesn't swallow it efficiently. This will only get worse as she starts teething etc.

The good news is her oxygen levels are doing great. It's just a pain for her because she wakes herself up with a cough, the same way we do when we have a cold. We have been suctioning her and there isn't really anything else we can do at this point. Her position does not make a difference.

So here is my plea: please join us in praying for her health and comfort. We want no less than complete healing for our baby, including the Moebius Syndrome and we believe God can do it. However we also know that there is a purpose behind all struggles and we are committed to his plan, knowing it offers the peace and joy of God. Therefore at the very least we pray Emma would be able to rest well and grow strong.

If you are looking for peace and rest from struggles in your life I would be happy to let you know how Jesus can provide it. Unless you've been reading for a while and know that God's peace surpasses all understanding!

New life

It is my 29th birthday soon (it's okay, I'm not ashamed of my age, yet!) Instead of a gift I told Scott I wanted to get my hair done and do some shopping (not spend to much, but get out in the city and go shopping - I love to do that! There's fun in the time spent, not just the items bought!)

Unfortunately my hairdresser is away next Saturday so I am going in this weekend! I am very excited. I last had a significant change in style after we got married, and well, it's time for another! When I look in the mirror I see the same face and body that was there a year ago ( a bit smaller actually!!) but the person is very different. I feel like now would be a fun time to try something new, and it wil grow back if it doesn't work out!

So Friday evening, before bed I went an extra step and gave myself a pedicure and manicure so that tomorrow I'll feel polished, head to toe! To enhance the mood I watched What Not to Wear and similar shows. The last one was about a British couple getting married to each other for the second time (yes, each other, but it's not relevant) after having had a baby (they kept saying she was a miracle baby, not sure why but it stirred something).

I turned the TV off and headed upstairs (Scott already asleep by midnight because he's working tomorrow). As I walked past Emma's door I felt compelled to go in. I went over to her crib, turned on the light (she's out of it, so didn't wake up!) and sat down. I just sat there and watched her (I didn't take a picture, sorry!) all snuggled up with her pacifier wedged under her chin!

It was all I could do not to snatch her up and give her a big kiss.

Looking past all the appointments, monitors, therapy and schedules, Emma is the best birthday gift I could want (already being married to Scott of course!). Sometimes it is hard to see the baby girl for all the work that comes with her, but I plan to go and stand over her often so I never forget how precious a gift she is. (Maybe not so much when she's a teenager and her floor is strewn with neck-breaking mess!)

Gallery

The need for bead...


Looking up from my lap...

New discoveries

Raising a child is a journey of discovery! Allow me to share some of my most recent discoveries that add to the excitement...

1. Emma's eye drops leave a PERMANENT grease stain on clothing!
2. There is a way I can hold her when she's tired that she falls right to sleep. But I have to have my feet up!
3. Changing a feed bag in the dark usually leads to spilled milk!
4. Emma is not slightly bothered by the vacuum cleaner.
5. My singing is entertaining, not soothing.
6. Emma can shuffle her way around the crib so that she wakes up 180 degrees from where we laid her! And it's in a clockwise direction!
7. Plastic rings are no substitute for a pacifier!
8. There is more than one way to hold said pacifier:

Parking lot

Today has been a great day, sun shining, warm breeze etc. A good day for Emma and I to head into the city to visit the office where I used to work. Everyone was excited to meet Emma and I always love it when they find out she is just as cute as her pictures, if not more so, and does not show signs of the complex start in life she has had!

After a great lunch (ah, sushi!) we headed back to the car. On the way I called Scott to let him know we'd be home in about a half hour. All I had to do was take her out of the stroller and into her car seat. Pretty straight forward?

Yeah, not this time! Before I took her out of the stroller I changed her wet diaper and vented her (letting the air out of her belly through the tube) as she had been fed a little while before. Out of the stroller, into the car seat and there it was, the sound that so frequently comes after a diaper change and why we go through so many! You know the sound I mean, I don't need to go there!

As she was already buckled I made the decision that another change would wait until we got home (is that cruel? she goes for longer at night!) Well, then she gagged - the sound she makes when she has air in her belly and needs venting. (It's a horrible sound and I can not bear it when I'm driving!)

I half unbuckled her and plugged in the tube. Out came the air and with it some of the milk from her belly. Once all the air came out I unplugged the tube, let the air out and plugged it back in to put back the milk.

All done, lift the car seat to put it in the car and see the feeding tube laying there. Can you guess? I didn't plug it in right but I couldn't see where it went, so carried on.

After all that I had to change her diaper - a crying baby is not conducive to safe highway driving! When I took her out the seat I found her clothes were soaked with milk! So I had to change her diaper AND clothes, on the back seat of the car in a dark parking lot!

All that took about a half hour! Good thing I had enough money to pay the higher parking tarif!

I thought it was a pretty funny story and if you know me, and how the feeding tube works I think you can get a good visual of the situation!

On the down side today, the hospital has told us we can't take their equipment to the UK because they wouldn't be able to fix it if it broke. they tried to find a company that could help in the UK but nada. Their solution? We should buy a pulse oximeter and suction machine. HELLO!! They would be $400 a month to rent them! mmm, may have to figure something else out!

Strollin

This afternoon I took Emma for her first walk around the neighborhood. I've been nervous about doing it just because I don't know if the sunlight hurts her eyes. As it was she seemed to enjoy it - I was careful to make sure her face was always in shade!

I'm sure Scott was confused when he got home and we weren't around though the car was!

We even stopped to speak to some people in the neighborhood out in their front yard.

I am so proud to show Emma off to people, but I'm still learning that when someone asks how old she is or praises her beautiful eyes I don't need to add the reason she is smaller than you'd expect, or why her eyes are quite so big!

I can only imagine how things will be as she gets older, but one thing is for sure, we will work it out together.

no nap

Yesterday was a "no-nap" day for me! That was a pity because Sunday night was almost a "no-sleep" night! By the time Scott came home I felt pretty burned out (I had some insurance issues to deal with too - the US medical insurance system really makes you appreciate the NHS!)

Thankfully he loves to play with Emma, so he gave her her bath and put her to bed. He made her laugh a couple more times first though (is it wrong to be jealous that I can't do it!!).


When we finally turned in for the night we were listening to the Veggie Tales CD that was playing in Emma's room, via the baby monitor! It was so funny I had to switch it for the instrumental CD we've had since last year, just so I could go to sleep. The CD was playing 24/7 in the hospital and I think we've actually burned it out now! So we left the CD player off. Apparently though I need the music to sleep now!!

Emma was back up again at 4am, and since I needed to pump I brought her downstairs with me where she usually falls back asleep. I was watching her half asleep, fight with herself to get her pacifier. I couldn't resist capturing it for you, enjoy!

Gaining weight

Great news - Emma gained 12oz in the past 13 days! She is now 11lbs 4oz which is exactly double her birth weight. She is 22.75" long.

Everything is going well and I'm pleased to say that I am having a quiet day! (Emma is currently trying to tell me why she does not want to nap in her crib at the present time! I wonder what words she'd be using if she could talk!!)

So, I took the opportunity to snap some pics of the bathroom facelift! it wouldn't be complete without the pictures of how it looked before!

Before...
After...
















Since it was just a facelift we couldn't change the wall tile, tub or toilet, so we tried to incorporate them.

Here are the other features we added: (these pictures are really just my way of saying how proud I am of Scott for his great work!)

Both the new light fixture and recessed lighting are new - Scott could be an electrician!! The hotel shower rod is curved making the space in the tub much bigger when closed!

Definitely, maybe

Today's church service was Family Day, where the whole service has a kiddie vibe and Pastor Bob's alter-ego Wally reeks havoc! We had so many kids and family's there because afterwards was the annual Pinewood Derby. Emma is so well behaved and sits quietly through each service and today was no exception.

She gets lots of attention from everyone and we love to show her off. I know it's hard for people not to touch her, but everyone's been great. I wonder why we have a compulsion to touch babies! I know I do it too. Someone should do a study!

Scott went to help out with the derby, so Emma and I came home after church and took a long nap. Well, in total! It was actually three shorter naps! The first Emma was in her crib, the rest she came into the big bed with me. I think she'd have been fine to get up, but I needed sleep and she always falls asleep with me.

We got up about 5pm and had dinner as a family. This weekend has been so great, just the three of us hanging out. I'm sure it could seem boring to some, but how I've longed for some "normalcy"!

While Scott was laying on the floor bouncing Emma on his belly this strange noise came out of her mouth, one we hadn't heard before. Every time he pushed her up and made a loud noise, she made this noise. It wasn't a cry, and it was not a regular sound. We think she laughed!

It came out like a "HA". We did it as many times as we could get her to do.

Assuming she was actually laughing it is so incredibly exciting!