Better...

I'm pleased to say that Emma slept almost through the night (just one incidence requiring a cuddle), which meant that Scott slept better also. Me? No!! Every cough got me up, not that I was sleeping soundly anyway. I seemed to have a lot of thought running through my mind, and normally I would have got up and wrote them down but I really wanted to sleep!

She still has a cold, but the coughing is not as bad and I'm keeping the Tylenol flowing. I'm thankful she slept in the crib last night, but she was on a pillow and the vibrating mechanism was going - I think an insomniac could sleep in there!

It was all good though and we headed out early to run errands, back just after 9am. Emma fell asleep in the car, so we went right to bed when we got home!

Grandma came over to watch Emma in the afternoon while I did some work and made dinner (once a month is doable!!). Then she took an hour long nap before dinner (4pm dinner!)

Did I mention that Scott pulled her g-tube out? No, oh! (Just to show I'm not the only one!!)

This morning I took Emma to the pediatricians. Aside from the bad night and choking, she snorted out some bloody mucus this morning. The doc thinks I must have irritated it when I'd suctioned her. The drooling and runny nose are either a cold and/or teething. There is nothing we can do to ease it, other than Tylenol and pray that she learns to swallow her saliva soon.

Emma was also thrilled to get a flu shot in her thigh at the end of the visit! I think the drama wiped her out and she slept in the car ont he way home and for another 45 minutes in her seat at home!

Once she woke up she was a happy girl, playing on the rug. Typical - I canceled her therapy thinking she would not be up for it! Thankfully Maryanne can come Thursday morning instead.

After lunch at 12.30 she was really tired so I halted the laundry fight and took her up for a nap. When she's not well she wants to be cuddled, so I obliged and slept until 4pm! She stayed asleep until 5pm, so you know she's really not feeling good.

Scott was too tired to work on the painting (lack of sleep!) and I had not been able to get dinner ready (laundry sucked my time away!) so we got Chinese food and watched TV.

We are hoping to get more sleep tonight, though Scott may need to hit the sofa if it's the same as last night!

Cute as a lamb

Last night we tried Emma's costume on for Saturday's Fall Festival. It's supposed to be a lamb, but could be a bunny, depending on your perception. Anyhow, we just couldn't wait to share what is possibly the cutest thing we've ever seen (we are completely un-biased).

Here she is...

Seriously, there's nothing cuter!!

Bad night

When I was a kid, as often as I would clean my room (pretty regularly) I would rearrange the furniture! I'm not quite sure why, but I still like to do it. Unfortunately our furniture does not allow me to rearrange our bedroom, so Scott agreed to let me paint it - a cheap way to change a room.

Last night we moved into the guest room so we could take our time to prep and paint.

Of course last night Emma had a bad night and she ended up in the guest room with us!! She didn't actually desat, however she was waking up every 20 minutes coughing and crying. We had no option to bring her into our (queen size) bed so any of us could get sleep.

I was able to get her to sleep in the crib for a couple of hours before Scott had to get up for work.

I'm not sure what's wrong, but I think she has a cold. She's definitely not herself today. She normally looks all around when I carry her around the house, but today she's keeping her head on my shoulder.

You may recall that we were told that if she got a cold she may need hospital care. We are praying against that, but also for the energy to take care of her round the clock. Today we will likely spend the day in bed!

Back to reality

Emma hangs out in the kitchen with us!

The weekend marked the return to normalcy in our household! Saturday we had such a great day as a family. The photo shoot was lots of fun, and we headed over to a friends house to watch the baseball in the evening.

That night Emma was returned to her room (albeit in the travel crib!) for the night. She definitely sleeps better in the travel crib for some reason, but not as well as she does in our room. Any idea why? Anyhow, I got up 2/3 times in the night, so getting up on Sunday was tough!

Church was great and Emma was making many of us laugh. While other babies fuss or cry, she just chats! She has a way of saying "eh" that sounds like a question. She also waves to the people around us. Thankfully she did not distract PB!

We had the youth group crowd over to watch the football afterwards. Emma took a brief nap and then came down to check out the scene. After another short nap later she was up for the evening!

We've noticed that she is as playful as ever if not more so, and she has started sticking her tongue out as far as her lip.

She is still drooling constantly and while it doesn't bother me, she is having some trouble swallowing it all. We've had a few de-saturations over the weekend, often preceded by some throat-clearing noises. I'm just keeping an eye on it for now, we have an appointment with the pulmonary doctor after the sleep study.

Today we hit the road for some errands and I could not resist getting these from Target:

And now we are just hanging out at home. I was so excited though when Emma started playing peekaboo with me using the blanket she's laying on. She started pulling it up in front of her face and then dropping it!

Seize the day (incl pictures!)

Last night I went out with the youth group (I'm back!!) and left Scott with Emma. Jeremy came over with baby Aaron though so I'm sure they had a great time. In fact, they watched the event we were at, live on the internet!!

We went to Harvest Crusades in the city, a free, 3-night Christian event with rock bands and a great preacher. I saw Jeremy Camp live and he is without a doubt my favorite artist, and he did the song that really touched me when Emma was in the hospital, Let It Fade. YEAH!!

The preacher was Greg Laurie, a middle-aged guy from CA. His son who was a key part of the crusade died in a car crash this summer and they played a slideshow of his life. He was 33 years old and left behind a baby girl and wife.

Greg's message this weekend focuses on death, not something many wish to discuss, but the one thing that is faced by us all. He gave a great analogy of how many people do not have a great passion in life, or know what their purpose is. Do you? I know I used to be like that - it's like waiting in line for a ride at a theme park like Disney. You wait for an hour or more for a 2 minute ride, and then go line up for the next one!

So many are living life like that, just waiting for the weekend or next vacation or national holiday. I even find myself doing that sometimes, waiting for the next appointment, birthday etc. It's really not living.

And then it comes to an end, sooner or later. What happens then? Most people believe that if you're "basically a good person" it's off to heaven. However the Bible is clear that "for all have sinned and fall short of the glory of God," (Romans 3: 23). We've all broken one of God's laws (the ten commandments) at least once. A small white lie is still a lie!!

So, in some way, to get to heaven we must compensate for this action against God, to be forgiven and then enter heaven. Unfortunately, as much as you can't get toothpaste back in the tube, you can't erase your own sin. Nor can you do enough good to balance it out.

Thankfully you don't have to! "For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. (John 3:16)

Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me. (John 14:6)

Jesus said to her, "I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die. Do you believe this?" (John 11:25-26)

If you do truly believe that this is truth, with your heart, then your heart's desire will start to align with God's desire and purpose for your life. You don't have to be "pure" to receive forgiveness - it is once forgiven that we are made to be pure (in an ongoing process that is not complete until we reach heaven.)

With all the violence around us, accidents, pain and sadness, it is okay to want more. We were created to find joy and peace in God's love and it's available to us all, all the time. I suppose you just have to want it more than the occasional "happiness" that comes at the end of the long wait. But I challenge you, as someone who waited time and time again, is the ride ever really that good? Doesn't the thrill fade the second it's over?

If this stirs your heart at all, has just the slight ring of truth to it, I want to talk to you. If you are wondering how we have come through the last twelve months with hearts even more full of joy, peace and faith, then I want to talk to you. If you've known me for a long time then you know there is something different about me now and I want to explain!

You might not believe that there is a hell, or that Jesus was telling the truth. If you believe in god, but not the God of the Bible, what are you basing those beliefs on? Are you willing to stake your eternal destiny on your opinion?

On a different note, the story about Greg's son moved me. With Scott's upcoming trip I felt a jolt, looking at the pictures of the little girl with her Dad, now in heaven. What would I be able to show Emma if something similar happened to us?

We have some great pictures, but I wanted some REALLY great pictures of our family. When I suggested we go and get some done professionally Scott agreed, and here they are!!

Winter's coming

I just had to take a picture of Emma in this cute bib today. I think it's one of the first gifts we received for her and it's so cute...


I don't know how cold it is outside today, but it's 65 degrees inside our house and it feels cold, well on my feet anyway!! I just put my slippers on and thought I'd better put some on Emma's feet too - here she is in her cousin's hand-me-downs, looking so adorable!


Yesterday Emma used her only form of travel (rolling) to reach the hardwood floor and then get into the entertainment center! Thankfully I moved all the cables and outlets into the cabinet a few weeks ago, so she'd be hard pressed to get to them!

As much work as it will be, I look forward to chasing her all over the house!

Positives

So I realized I may be sounding negative about Emma's post-surgery issues, so I'll try to be more balanced.

As I said, she is drooling more, but it has been suggested that it could be extra drool to help heal the wounds, which makes total sense. And in the meantime she gets to wear all the cute bibs we have for her.

Her therapist had a cancellation today so she came to see Emma as she couldn't on Tuesday. There doesn't seem to be any sign of regression in her body, which the therapists had warned us about. Only that progress might slow down, but no signs of that so far.

Last night she had a dry mouth after we swabbed it with the medicine, so I dipped her pacifier in water and gave it to her. Not only did she take it, but we heard real sucking noises!! (Sucking is something she is not supposed to be able to do!!)

And after 12 hours of sleep last night (the last 4 in bed with me!!) she had a great day and was much less clingy.

Praise the Lord!!

Guatemala-bound

A while ago I mentioned that Scott is heading to Guatemala on a missions trip, and that trip is this month!

For 8 days, Scott and 6 others from our church are heading to the Guatemalan mountains to help with construction on a bible school. In an area where there are relatively few churches, a bible school will train pastors who can start up churches in the area.

Churches are crucial in poorer parts of the world where the gospel can not be advanced on TV or billboards. Not only do they fulfil the call to spread the gospel, but also provide a place of refuge and community.

In 2004 Scott and I travelled to Namibia to work on a bible school there and it was an incredible experience. If we did not have any kids I would be going with him!!

Of course, we need to raise money for Scott's travel but also toward the building materials they will be using when they get there. If you would like to help us with this important trip, we would greatly appreciate your prayer and any financial contributions .

And while Scott's away I will need your prayer for patience and energy!!!

Only Wednesday!

I can't believe there are still two more days until the weekend! I am exhausted already!

Last night Emma slept in our room, in the travel crib. I had to rock her to sleep and then lay her down because she is refusing her pacifier, which is the one thing that helps her to fall asleep! As you can imagine I don't quite know how that is going to go long term, but for this week I am breaking all the rules and letting her nap with me in our bed, and putting her to bed after she falls asleep (her bed - she will not be in our bed overnight!!)

When the weekend arrives we will start working on the schedule again, it will be better if Scott's here too, he can take the crying better.

I've been noticing a few changes since Emma's surgery. The first is that she is louder, but talking less! We are assuming this is because her mouth feels weird.

Another is that she is drooling out of the left corner of her mouth. It is highly likely this is due to the Moebius Syndrome - she does not have as much control of her bottom lip now. She is still 'smiling' in her way, but only for Daddy!! Same with laughing!

Emma has a very short narrow tongue. This is another Moebius characteristic. She has not poked her tongue out and I don't think she can, regardless of the stitches etc.

So far Emma is super clingy and not quite as playful as normal, which is probably the worst part of all this. I am hoping she bounces back soon.

As for me, I'm just trying to make her comfortable and praying that there are no lasting emotional effects of the surgery.

Home Sweet Home

We were able to get to the hospital before Emma woke up this morning, which was nice. She was much more herself today and although she is still pretty clingy and tired she has been playing and babbling.

She was clearly not enjoying her confinement in the hospital room...



She had a new roommate today, a 2 year old hyper boy. I really felt for his mom who was trying to contain him in the room, but on the other side of the dividing curtain. Clearly hospital stays get worse with age!

After the plastics team breezed in and out (yes, there is disdain in my voice!) the PICU team came round and let us know that we had been cleared for discharge, unless we felt that she should be observed for another night. I did not have to hesitate in opting to go right away!

We were home by 11am and Emma is almost herself. It's hard to know where the effects of the surgery end and the willfulness starts!! Thankfully Scott is home with us and he is going to be a big help!

Thank you all for your prayers. We are hopeful that her airway control and sleeping have improved. We have a sleep study scheduled for October 28 which will confirm that.

Good night

Scott and I made the tough call to come home to sleep last night, after Emma's usual bedtime. One of us could sleep by her bed, but I did try to nap in the bed chair and it was not great!! Also I knew I need to get some sleep to be able to cope when she comes home.

I called the nurse before I went to sleep and again just now. It sounds like she slept all night and didn't have any episodes.

Today Scott is going to drive me in before he goes to work and will come and get us when she is discharged.

There are some big differences between Newborn ICU and the Pediatric ICU where Emma is right now. The big one is that she is in a real room, with a door, but it is shared. Her roommate left yesterday morning though!

There is a TV (woohoo!), you can bring food in, she has a window bed and a bathroom in the room. However, we noticed last night that the nurses were not quite as quick to respond when her vital signs change. I'm trusting that that would not be the case when we were not there!! We also did not have to stop at a desk before going to her room - a little too open!

That is enough for me to prefer the NICU for better care! And we still think it's an awesome hospital.

Not good

I'm pleased to say that Emma is doing fine, now. 

 

Following my last post Scott and I waited patiently to be taken back into the recovery room.  And waited. And waited.  I seriously thought maybe they had to re-intubate her. 

 

Then my cellphone rang.  I took it out of my pocket and saw the hospital number on it (I know it well!!).  I answered and spoke to Emma's nurse, in the intensive care unit.  Apparently she was already there and they wondered where we were.

 

As we, well, stormed up there (me more than Scott – he stayed out of my way) I tried not to blame anyone in particular for the oversight of telling us where our baby was.  When I arrived there I stopped trying.  You see Emma had been there since 9am, inconsolable and very distressed.  We arrived no earlier than 9.50am.

 

I will let you imagine how I felt.

 

Of course, she calmed down as soon as I took her and went to sleep.  Her cries are pathetic which is so hard to hear.  Her arms are in splints so that she doesn't put her hands in her mouth.  She doesn't like that as you can imagine.

 

We have put her pjs on so that she feels more at home and as you will see from the pictures and video, she's doing remarkably well and even talking!

 

Our main concern now is that she won't sleep, or let us put her down!!  Good thing daddy is here!

Not good!

Pre-op

post-op

So far..

It was a very early morning, up at 4.30am!!  Emma was confused at being woken up to leave - I never wake her!!!  She was very cute though and behaved super well all morning.

 

Scott got a kick out of our meeting with the Anaesthetist.  As we sat on either side of the gurney, Emma clad only in a diaper and laying on her belly decided to rip out an almighty, well you can guess - she's a Morton.  It was funny, we all laughed!  ("A little gas for the gas man" - Scott!)

 

As it got time to leave pre-op, her nurse gave her Tylenol and Versed (sp?), which acts as a calming agent.  Calming?  She was so chilled out she didn't even squeak as the nurse wrapped her in a blanket and carried her away!  That was good for us as I don't know if I could have taken an emotional farewell!

 

We went for breakfast in the cafeteria and not 5 minutes after we came back tot he waiting area we got the call that it was done and they are taking out the breathing tube before she comes out. I'll post more when we've seen her and settled into the Intensive Care Unit.

 

 

 

 

The night before

Yes, part of me is nervous about tomorrow. The procedure should be straight forward and take less than an hour, but it's the anaesthesia that is the risky part. We will be prayed up and are putting our faith in the Lord, who knows all, sees all and loves all.

I will post news as we get it and am confident that things will go smoothly and be uneventful.

As for tonight, we are keeping things as normal as possible. After bath-time, Scott and Emma take some time to read her Bible before bed...



And here's a random picture from Kali's birthday party on Thursday!

If you would like to view the pictures that have been posted on this blog over the past year you can do so in the blog album. Just click here

Surgery Scheduled

We have to be at the hospital by 6am on Monday!! I know!

This week has been tough. I've been working on a project for my former company (and thankful I am for the opportunity and extra $$!), really only a couple of hours each day and none on Thursday. Grandma Ellen has been great, coming over to keep Emma busy while I work.

However, related or not, Emma has created extra work for me because she has decided not to nap this week! Seriously, it's like she never started taking two hour naps each day.

I can't figure out if it's because our routine has altered slightly, but it's not like we have exactly the same plan each day anyway. Another possibility is that she has been spoiled sleeping with me for a couple of hours in the mornings and wants to for all sleeping! I think this is the most likely and will take discipline on my part of getting up when she does. Great!!

A source of great wisdom, my Grandad pointed out today that a change in routine is good as no-one can keep the same routine going indefinitely.

Of course my main concern right now is next week. If she is clingy and fighting sleep now, how will she be in the hospital!! I guess we'll have to wait and see on that.

One of the good things this week was the speech therapy session on Thursday. Brooke said that Emma has improved in how she responds to the food in her mouth (although I've been rubbish at feeding her regularly!) and also all the sounds and tones she is using in her speech. It was really the first time she has heard Emma as she has always been shy before! This time we put her in the Exersaucer and ignored her. It was a matter of seconds before she demanded our attention!!

This morning Emma and I popped to the pharmacy to pick up her medicine before breakfast. I anticipated it to be a quick trip, just to get out of the house.

I thought I'd share the exchange I had with the cashier, for some reason it seems like it was an important conversation!

It was before 9am, so the store was pretty empty and as the cashier came over to ring up our charge she said she must see the baby! Emma's stroller was facing the counter so she could do that. She started "ahhh-ing" over her and asked if she could smile! I said that she couldn't, which welcomed the "not yet" response!

It may just be me, but I can't let that go! Emma would smile if she could and assuming she just can't, YET seems to me an assumption that she is behind in social development. Sure, the average passer-by has not looked that deep into it, but I have too. Besides, you'll see why it's actually better to elaborate...

So I said "Actually, she can't. She has facial paralysis (more simple and understandable than all the 6th and 7th facial nerve jargon!). The lady responded with "Well, you're a sweetie anyway." She then proceeded to make even more baby talk and cooing to her! She did ask if she would ever be able to smile and I stated that I did not know, the truth!

I need to also mention that Emma, always 'expressionless' also decided that she was not going to move a muscle, anywhere and nor would she talk! She sat there like a sack of potatoes!! I wish she would let everyone see what a vibrant and noisy child she actually is. But no, not this morning!

As the lady told me about how her 6 year old son would love to see the baby, and has been requesting a baby sister from his parent, then her mom called and she was telling her she should see this adorable baby, all the while I am waiting patiently for my two items to get scanned!

However, unlike normal, I actually was patient as the lady asked what Emma was dressing up as for Halloween. I answered that she would be a lamb before I realized that we don't actually participate in Halloween as the majority of people do (it's creepy and that's all there is too it!). Instead Emma will be in costume for Fall Festival at church on October 11 (2-5pm). It's great for kids as they dress up, get candy and play games etc.

I invited the lady (Beth I think her tag said) to bring her son to Fall Festival. She said she might do that. Then she rang up the items.

Now, if I had not elaborated on Emma's 'smile' I would never have had the opportunity to invite her to Fall Festival.

Did I mention that this was supposed to be a 5 minute trip?! Anyway on the way home the dreaded 'check engine' light came on. Two words for you - NOT NOW!!!!